My Cognitive Changes Because of Multiple Sclerosis

My Cognitive Changes Because of Multiple Sclerosis

The list of symptoms that someone fighting Multiple Sclerosis might encounter is extremely long.  Over the years, I’ve written about many of the ones that impact my life.  Until today though, I haven’t gone into too much depth about the symptom that has been the scariest to me: cognitive problems.  Often referred to as “Cog Fog”, the cognitive problems that I’ve developed because of MS have had a profound impact on my life.

Some Background

When I was diagnosed back in 2000, I knew I’d probably have some physical issues.  I grew up with a grandfather who had MS, so I’d seen what the disease could do.  I thought my biggest issue would be that, eventually, I’d no longer be able to walk.  Even my first relapse struck my legs, leaving them too numb and too weak to use.  It never occurred to me, at the time, that the disease could impact my very ability to think.  I went on to college and then a career as a software engineer, the whole time thinking, “Ok, maybe I’ll be in a wheelchair, but I’ll still be able to do my job.  I’ll still be able to think clearly.”  Turns out, I was wrong.

I’d say my first ten years or so with the disease, I didn’t really have any cognitive issues.  Then, I started encountering them sporadically.  Problems with remembering things, paying attention, and problem solving.  All things that were pretty crucial to my career.  I always said, if I could boil my job down to one phrase, it’d be “problem solving”:  writing code or directing others to write code to solve problems.  When I first started noticing issues, like many would do,  I denied it.  I blamed it on getting old or other symptoms impacting me.  Then, about 13 years after my diagnosis, these problems got dramatically worse.  I left work one day thinking it was a relapse of some kind and that I’d be back.  That didn’t happen though.  I did the IV steroids, saw my neurologist, got tested for cognitive issues, and was told that I was transitioning into Secondary-Progressive MS.  I was then told my career as I knew it was over.

What?  How?  I was only in my mid-30s!  I couldn’t and still can’t believe it.  My career was what defined me, it’s what I worked for all those years in school.  Now it was gone, almost overnight.  Except that it wasn’t overnight.  You see, relapses may be the most visible moments of MS, but the disease doesn’t stop in between them.  Even if you feel great, that doesn’t mean trouble isn’t brewing slowly over time.  Tysabri has, so far, been able to slow/halt my progression into Secondary-Progressive MS.  Damage is already done, though.  There is nothing that will regrow the vital myelin sheath that once protected some of my nerves.  The issues that I have are ones that I will always live with.

Short Term Memory Issues

So what am I talking about?  Well, I have memory issues.  Particularly short-term, but some long-term too.  I’m sure many people know what it’s like to walk into a room and not remember why you’re there.  Imagine that, but much more often, with everything.  I can be watching a show on TV, a commercial will come on and I’ll forget what I was watching.  It will come back after the break and I’ll have no idea what’s going on.  Same with reading (ugh, I used to so love reading), I can go from one paragraph to another and completely forget what I just read.  My memory falls back several pages.  I still fight hard to read a lot, but with this issue, in the course of going through a book, I end up going back to re-read pages a lot.  Every book is like several books for me now because of this.  This same issue can be a problem when having conversations as well.  I’ll often forget what we are talking about.  Many times, if it’s important, I will look down at my phone, aiming my ear at the person, so I can concentrate.  Sometimes I’ll even takes notes on my phone as the conversation is happening to remind me.  It looks like I’m not paying attention, but that’s far from the case.  I’m also constantly covered in sharpie ink, because I carry one with me to quickly jot notes on my arms.  Sounds strange, but it’s effective for me.

Long-Term Memory Issues

While my long-term memory issues are not as common, they are still there.  I will often forget things I’ve known my entire life.  The PIN for my debit card is one example, even though it hasn’t changed and it should basically be muscle memory punching it in at this point, I’ll often forget it (and of course get a suspicious look from the cashier).  I’ve even routinely forgotten how to use simple appliances that I’ve used for ages, like a microwave.   Directions are an issue too, I flat out forget how to get places, even if I’ve been going to them my entire life.  It’s just one reason why it’s rare that I drive.  Other gaps pop up all the time, things I’ve read or watched.  I’ve even been unable to come up with my wife’s name on occasion (I’m lucky to have a super understanding wife!).  I know the information is in there somewhere, I’m just completely unable to access it.  Even knowing it’s there, it’s hard not to feel dumb about it.

Attention and Problem Solving

My attention span has degraded a lot since that one big relapse that pushed me onto disability.  My ability to focus is very much hampered.  It’s not an issue that I’d ever had in my life, so it’s very confusing for me to get so distracted.  This, coupled with problem solving issues, is a big issue for me on a daily basis.  Simply trying to figure out and plan my day can become a big struggle.  I very much rely on a routineand my wife to get things done, otherwise I can sit for a very long time trying to figure out what to do first.  I get confused often now, and being confused so often can be extremely scary.  I almost can’t imagine how I did my job before, I seem so far removed from those abilities.

The Fog

You’ve no doubt heard the phrase “cog fog”.  It’s a great one because being in a fog is a good way to describe how we feel.  When these issues hit me, I certainly feel like my brain is in a fog and I can’t get out.  I’ve said that fatigue can feel like walking through quicksand or wet concrete.  Cog fog is similar, but it’s your thoughts, your memories.  You can’t think clearly and you can’t seem to get out of it.  Just like being in a thick fog, it’s easy to get lost.  I feel lost a lot because of these symptoms.

The Effects

All of these symptoms can make life a bit difficult for me at times.  Aside from the types of problems I’ve already mentioned, my cognitive problems have been a huge cause of not only frustration, but depression as well.  I often feel like I’m not even me anymore.  How can I be me if I no longer think the same way?  It also feels like a lifetime of education and professional experience was for nothing.  That can be a hard pill to swallow.  My cognitive problems, along with being on disability (and those two are related), are my biggest mental hurdles.  Like many MS symptoms, these problems are invisible, which is always difficult when trying to make others understand them.  This only furthers the sadness that these problems can cause.

So you may be thinking, “well, you do all this writing, how is that possible?”  I do, and here’s the thing, I’m not a confused, forgetful mess 100% of the time.  Like many symptoms, some moments are worse than others.  Things like temperature change, stress, and fatigue can increase my issues.  However, I do have glimpses of the old me, and that is when I try to write.  Even with those glimpses, my writing can be pretty unpredictable.  I may feel well and turn out several articles in a short period of time.  But I also have times where one article will be piecemealed together over two or more weeks.  I never know when my brain will be working correctly; when it is, I try to take advantage of it.  There are still times though, that I think I’m feeling good, but something is off.  Because of that, I have my wife look over everything before I submit it to our editors.  Sometimes she comes back and basically has to say, “Sorry, this is gibberish”.  That’s an important point, because it illustrates that sometimes I don’t even realize I’m having difficulty.

Conclusion

I know this has been a longer article than usual, but thanks for staying with me.  This is a topic that means a lot to me.  I’ve had a lot of symptoms throughout my battle with MS, but this has been one that has scared me the most.  I know others battle these issues too, and so I knew I wanted to cover my experience in depth.  It’s important to talk with your MS specialist if you think you are having some cognitive problems.  They can test you further and recommend some treatments that help.  If you are reading this and you know someone with MS, please don’t assume that your friend or family member is just getting older.  Absolutely don’t say that you “forget things too”, I assure you that what they are experiencing is different.  I always hope to get good discussion out my posts, so please hit up the comments with your thoughts and experiences!

Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (147)
  • Bmellor22
    2 months ago

    This is such a good article. I can’t believe I have finally found someone else with cognitive issues. Now, my question is how do I get my LTD insurance to believe me? I have approval from 2 Dr’s that support my not working, but my first claim was denied. So I am appealing and will try again, and hopefully will be approved this time. But the insurance company sure goes out of their way to make me feel guilty and belittled. I know I am not scamming anyone, and I have heard rumours these insurance companies say NO automatically because most people will not appeal, but I don’t know if that is correct. If anyone has any opinions, suggestions on the, I would be very much appreciated. Or do you think I should jump right away and talk to a lawyer. Thanks fellow Cog’s. Maybe we should make up a funny t-shirt that only we understand….

  • Devin Garlit moderator author
    2 months ago

    Thank you Bmellor22! The system is incredibly difficult to deal with. I highly recommend seeking out a disability lawyer, once that specializes in this sort of thing. It can make a massive difference.

  • Shonn28
    7 months ago

    I just came across thus article and so glad I did. I was diagnosed on New Years Eve of 2017 and it has definitely been a rollercoaster with my symptoms. I’m writing because my Cog Fog is very real and I don’t think people really understand how it affects someone with MS. My loving boyfriend gets frustrated when he has to repeat himself while talking with me. I want to try and explain in the best way that it’s hard for me to focus sometimes and I’m easily distracted. The scariest part is I hear him talking but it doesn’t register in my brain and to me its just words Im hearing and can’t always get my words out to what i want to say. I get sad about it because I’m 37 with 3 beautiful kids and I can’t work anymore and fighting to get approved for disability. I would love to go back to working but between relapses, fatigue, weakness, arm and hand tremors, and my brain fog i feel like i would just not be able to comprehend the way I use to before MS. My symptoms hit me within 2 weeks of finally knowing what was happening to me.

  • Devin Garlit moderator author
    7 months ago

    Thank you Shonn28! You definitely are not alone in what you’ve been experiencing. It might be helpful to share this article with your husband and family to help explain what your symptoms are like. I find that, for some reason, it’s easier for friends and family to understand when they learn about it in someone else’s words. Good luck!

  • zenhead
    12 months ago

    I’ve read and re-read this several times. Something I’ve tried to write about, but never been as successful as this. Stuff that needs to be said, but is hard to talk about. I will share.

  • Devin Garlit moderator author
    12 months ago

    Thanks so much zenhead, it took me awhile to capture these thoughts, appreciate the share, because it’s something that simply isn’t talked about enough!

  • Nissa820
    1 year ago

    Devin thanks so much for this article. I’m currently going through some of the the same exact cognitive issues that you spoke about. I’m currently still working at a local health department in my state and I find it very hard to remember and keep up with my daily task as I have done in the past. My employer has not made things easy for me as well. Moving me to different job sites and giving me different job duties has completely stressed me out and given me severe cognitive issues. I work better with consistency and I feel like they are setting me up to try to push me out. People don’t understand this illness of course because it’s invisible. I always feel crazy trying to explain why I can’t remember sometimes or why I get sidetracked. Often I can’t even find the words I need to use to even describe my feelings. It has caused a lot of sleepless nights, hence why I am up now at 3:47am depressed and stressed writing this reply. I’m trying to get out of this funk because I know it could possibly send me into a relapse. The physical symptoms are certainly starting to appear. I will quit rambling on and again say thank you for writing this and making me realize I’m not the only one dealing with these symptoms of MS.
    Anissa

  • Devin Garlit moderator author
    12 months ago

    Thank you Nissa820, so sorry to hear of your situation. I hope you can discuss the issue with your employer. Moving around a lot will certainly make things worse, consistency is extremely important to people like us. We can even thrive in a consistent environment and schedule.

  • Mary1040
    1 year ago

    This article describes in detail so much of what I am feeling, and dealing with every day. Thanks. Not being able to verbally explain to others what is happening to me is a struggle in its own. I would love to print and carry this with me so the next person that says “are you ok”? Ir “What us wrong” I can say, here just read this. I was DX only 5 years ago. I am 48 years old, a single mother of 2 teens. I am still working full time, My husband if 25 years died 7 months ago. Unfortunately we divorced the same year I was DX. I thought I was doing pretty good. When we lost him the stress, anxiety, the fear of my daily struggles became more than what I can handle. I do have a very strong family and friend upport system, but my “cognitive changes” as you described in this article are multiplying quickly everyday that passes. I used to rely on my strong will and strive to succeed at home and at work. I feel like I can barely make it through 4 hours at work anymore. when I’m at home I can’t wait to get back to work.

  • Devin Garlit moderator author
    1 year ago

    Thank you, I’m so sorry to hear about your struggles Mary1040. I hope this piece can help explain what it’s like to others, so that you can at least get some understanding. Hang in there, there are many of us battling this every day.

  • lindsay30
    1 year ago

    This means so much to me that u take the time to write and post these…it has helped more then i can describe

  • Devin Garlit moderator author
    1 year ago

    Thank you lindsay30, I appreciate you saying that!

  • chrisf
    1 year ago

    I cringe when someone says they forget stuff too
    My first sign of cog problem was synonyms lol. I was always excellent at writing. I started noticing I would write or type(llol I had the word “right” first) the word two when I meant too, or high when I meant hi. That’s not like me…ever! It’s like I have to watch what I type the way I have to think every step I take. And I can’t remember a thing about the book i just finished a week ago. But I do know I liked it. It makes me sad to be like this. It has taken a part of me away.

  • LilTxinCO
    1 year ago

    You just managed to describe the last 9 month’s of my life. Just haven’t been focused enough to explain it to friends and family.

  • woodstock525
    1 year ago

    Thank you so much for your article! I read it thinking, this is me. I started noticing memory issues like forgetting words about 7 years before my diagnosis. I was around 40 at the time and my doctor attributed it to premenopause though I was sure it wasn’t. I’ve since had cognitive tests which show some slight deficits but not enough to amount to much. Still at work and at home, things have become more and more of a struggle. I overlook important emails. I sit down to work on a project and either get lost in the weeds or it will take me most of the day to accomplish what used to take me at the most an hour or so. I’ve tried post it’s but accumulate so many and can’t remember half of why I wrote them. I’m so afraid as many of you are of losing my job or really dropping the ball on something and being removed from my position. I used to be the go to subject expert. People still think of me like that and I feel like such a fraud. There are many times when I can’t remember the names of the small staff I supervise or my boss or other people that I’ve known for years. I have one grandson born last March and I typically can’t recall his name either. It’s crazy the way this all works.

    It hit me most strongly over winter break. I used to be able to make cookie doughs one after the other and make five pumpkin rolls within a couple of hours. I had all of the ingredients but discovered that what used to take me a short time now takes hours. Not sure if it’s because I have to double and triple check everything and then become fatigued or what. I’m so

  • Joelle Buck
    1 year ago

    Very well said… I’m right here with you exactly starting on rituximab Monday January 2018

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Joelle! Best of luck to you!

  • bsaltyjo
    1 year ago

    I screamed that’s me! I was fearful of the physical limitations. Now I fear my thoughts being lost. I am a teacher what if I’m not really teaching the correct material? I have much anxiety over this. Thanks for letting me know I’m not alone.

  • Devin Garlit moderator author
    1 year ago

    Thank you bsaltyjo! You are most certainly not alone!

  • Azkrazy
    1 year ago

    Thank you Devin for writing this. I really needed to hear this today I am in the process of acquiring disability hopefully that is I was a professional as well for 20 years and I just can’t work I can’t do it physically and mentally I have a doctors appointment to day she’s a new doctor my old doctor of 20 years had to retire due to illness I feel isolated Because so much of what I experience is invisible I hope my doctor would be my advocate like my old doctor but I’m not so sure Recently I had asked for an excuse for jury duty because I knew there was no way I was driving a 120 miles by myself Let alone be an asset mentally to the cause I called and asked for an excuse I got a response saying she felt I was not disabled enough to excuse me what? After super anxiety and panic for days I was finally able to contact the court directly even then they were demanding a note to excuse me and that’s when I broke down and started sobbing on the phone which is so demeaning of my character to feel like I have to jump through such giant hoops I feel invisible and I wish I could be seen anyway that prompted her to go ahead and excuse me. I am thankful that you wrote this Devon because you have described so much of what I feel and can’t explain and wished I could I spent like 2 weeks writing a list of my symptoms. How can that be hard? I mean if it’s a symptom and you’re experiencing it how can not be hard? Well I don’t feel every symptom all the time and if I don’t write it down I forget that I had it Thank God for voice text Or I wouldn’t be able to share this comment or recite my list in front of me here’s what I experience Pain weakness falling bladder control fatigue memory loss anxiety swallowing dizziness headaches hearing loss depression spasms interrupted sleep night vision double vision itching smell altered taste altered focus attention confusion But being a cosmetologist successfully for so many years you can look at me and say after hearing that but you look so good! I’m scared that I will still be in visible to this doctor and that creates a lot of anxiety for me I thank you for this article because I see myself in you…sadly but true. Thank you for shedding light on what can’t always be seen…..Azkrazy♡

  • Devin Garlit moderator author
    1 year ago

    Thank you Azkrazy! I’m so sorry to hear our your experiences. You are most certainly not alone. The invisibility of many of our symptoms is such a hard thing to deal with. Not that I want to look disabled, but there are certainly times when it would make things a bit easier and help people understand. I hope your new doctor works out!

  • Diana Baruch
    1 year ago

    Devin, I am sure what you just wrote here will define how a lot of people feel. I’m so glad you actually wrote this down, because now maybe I can explain to people how this disease affects us in so many ways. Unless you have MS, it is very hard for people to really comprehend what we can go through in a day. I have had MS for over 40 years now, was married for 37 years, and partially put the blame on this for my divorce. I was fortunate to have two beautiful girls though, but experienced two miscarriages, and underestimated myself a lot, because my ex was in denial the whole time, and didn’t want to comprehend why I was constantly tired, and had no idea how depressed I became with life in general, It is hard to think back and realize how many issues were caused by my having RRMS, because one is loath to put the blame on a disease. Depression, of course is part and parcel of this wonderful curse, and it never goes away, even though we take medication to try and eliminate it! My fellow friends with MS, you have my commiserations. You really need to be super-special to overcome all the delightful symptoms we experience. Good luck to everyone!!!

    Diana

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Diana! It is always my goal and hope, to be able to somehow articulate what so many of us go through in hopes that others who don’t have MS can read it and at least understand us just little bit better. Thank you again!

  • titustroy
    1 year ago

    Devin,

    Thank you for articulating what many cannot. My MS diagnosis came in March of 2016 but I have always been the “spacey one” in my family, so it begs to know exactly how long I’ve been battling the disease. I’m 34 now and like you though the only thing I had to worry about was my ability to walk in the future. I have found it harder and harder to find words, to find sentences, to find anything really. My husband feels like I’m “haha getting too old” and at times I feel like he forgets I have a disease that affects my brain funtion as well as physically. As difficult as it is to say it’s comforting to know I’m not alone in my “losing my mind”, so thank you for perdectly putting into words what so many feel.

    Heather

  • Deborahpoetry
    1 year ago

    This is where my MS has hit me the hardest. I understand your fears…I feel them. I understand your annoyance…I feel it. I know people are just trying to make you feel better when they say they forget things too, but they don’t seem to realize they’re minimizes the impact this disease has on us. Thank you for sharing.

  • PapaE7
    1 year ago

    Devin,

    While reading your post, I could 100% identify. I had my first episode 35 years ago suffering from quite definitive loss of balance and speech. It progressively cleared up over a few weeks and I have lived a relatively normal life.
    Over the last few years, I have recognized a decline in my memory and my ability to problem solve, confusion in large discussions, attention span and focus. It truly hit me hard mentally as I misinterpreted it as early signs of Alzhiemers as my father and two of his sisters suffered from it. I knew what was in store for my future.
    It wasn’t until this last June that I awoke with numbness in my facial area. Do to my age, I thought I had better seek treatment thinking it could be signs of stroke. The local medical hospital treated my symptoms as stroke also. A quick CT Scan was negative for signs of stroke, so an MRI was ordered to identify signs of mini stroke. It also showed negative for stroke, however this is where medical doctors said they suspect MS from MRI images. A follow up LP more definitively diagnosed MS. I chose to seek second opinion at Stanford where a brain and cervical MRI, LP and evoked potential eye exam concluded the MS diagnosis.
    Currently waiting for Ocrevus infusions.
    Although I’ve spent what seems like a normal life, I now know that I’ve put off symptoms to other causes. Numbness and burning sensations from time to time in my legs was put off as problems from on old back injury. Weakness was put off as aging and “damn I need to lose weight and get in shape”
    But I must say, of all the physical symptoms of the desease and imbalance on my feet, it is the cognitive losses that have effected me the most. Mentally, I can truly say I can deal with physical losses but the mental losseshavebwen the most difficult.
    Your post helps to understand that I am not imagining the difficulties or going crazy.

    Thanks for sharing

  • wudalver
    1 year ago

    This is like living my life it’s scarey when this happens

  • Lefty Lib
    1 year ago

    Devin,

    You’ve explained things pretty accurately for my situation as well. Totally get how one day you feel you can articulate in writing, and how on others, not so much. I get how sometimes it can takes days/weeks to complete something, that might have taken a couple of days before the cognitive troubles hit hard. Short term memory with numbers, lists, anything multiple. I’ve started repeating the numbers aloud (or aloud in my brain) to create a rhythm that repeats long enough to get it written down elsewhere (calculator total to checkbook, etc.). It’s crazy. Three different neuropsychiatric studies to confirm the slowing, yet it’s attributed to MS or depression or a combination of both. Used to be more of a writer for business purposes, and a creative writer to some degree, and now it takes 3x as long to write the way I used to. Was once a marketing director in the regional shopping center field, held other marketing positions as well and the multi-tasking and speed of processing before would be impossible for me to attempt to do today. Yet, because I don’t own property here in So. CA and had to begin collecting SSDI, my partner and I are still renting an apt., and the landlord just raised the rent by $200! Scared to death, but have to go back out there at the age of 58 after not holding any job since 2010 and find something part time just to try to make ends meet. Can’t stand for a long time, can’t sit for too long without pain – this is going to be the biggest challenge of my life since filing for SSDI in the first place. I was told some time ago that cognitive impairment is the number one reason why people leave the workplace, not physical disability! Who would have thought it could be this bad?

  • Devin Garlit moderator author
    1 year ago

    Thank you Lefty Lib, I’m so sorry to hear of your struggles. I completely understand. It would not surprise me that cognitive impairment is the number one reason. Sadly, it’s not understood well enough. I hope you a well!

  • Lori
    1 year ago

    Devin,
    I was a process improvement/strategic manager at Boeing. Before I had MS I could remember a number quoted to me ten years ago to the penny. Now I’m lucky if I remember what I’ve had for lunch yesterday. I’ve forgotten my pin # as well and have gotten lost in my car. Thank goodness for my GPS but even then sometimes I get frustrated and don’t know what to do. Loss of my cognitive skills depressed me more than anything in my life. Like I told a friend of mine, you think about loosing your sight, hearing, ability to walk but never in a million years did I ever think my intelligence would be affected with any disease or injury. I was Valedictorian, Graduated College with honors, and was well know at Boeing because of my Return on Analysis on improvements and presentation skills. To put it bluntly loss of this was like dealing with a death to me. I’m still very depressed and am nervous when running into others that knew the “Lori” before MS. On a bright side I can read a book and then re-read it and I don’t remember then ending. I can see a movie a second time and enjoy it as much the second time because I don’t remember the ending. Perhaps the saddest part is that my children never knew the old “Lori”. Both of my children are very intelligent and while others have told them they have inherited it from me it’s really hard for them to believe because they just see MS Lori. I do cognitive exercises daily or I imagine it would be worse but missing a big part of who you were is devastating. I’ve learned to live the best quality of life that I’m able with the cards I’ve been dealt but every once in a while I miss the old Lori. Thanks for sharing your feelings through this article. At least I don’t feel alone on this issue. God Bless you Devin!

  • Devin Garlit moderator author
    1 year ago

    Thank you Lori, I completely understand. Your story is so very similar to mine, and so many others. We’re most definitely not alone!

  • caya1430
    1 year ago

    The cognitive issues started extremely young for me at 11 years old. I remember as if it happened yesterday telling my mom, in our kitchen, that I feel really weird. As if I’m here, physically, but my mind isn’t a part of my body. Almost like I’m watching a movie. Not being able to focus or concentrate right. Headaches after headaches which makes my focus and attention worse! Talking to someone, then hitting replay in my head to try and remember what I said. Hoping I didn’t sound dumb or say something irrelevant to the conversation. Because I don’t comprehend some things right away, I get embarrassed then I get angry with myself. However, being newly diagnosed, I now understand what my deal was forever ago. So many of these articles make so much sense now. It’s almost a “seeing the light” moment. Thank goodness for this wonderful community of people! The support is appreciated Thank you Devin

  • Devin Garlit moderator author
    1 year ago

    Thank you caya1430! I think what you have realized is something that many of have, when we look back years to the time before a diagnosis, we can usually find things related to MS. My mother has actually pointed out some moments that made me think back and realize that, wow, something was going on even when I was much younger. I think it’s more common then most people realize or think about.

  • Darlene
    1 year ago

    When I am at home in my daily routine I can deal with the “thinking” problems I have and the memory lapses, BUT, in public I am sharply reminded of how much I am impacted by the cognitive issues. It is downright embarrassing. In social situations recalling names I may have known an instant before is so frustrating. I appreciate being with MS support groups, and family and friends who know, and understand what is going on. I find myself shying away from other situations I this venue, thank you !

  • Devin Garlit moderator author
    1 year ago

    Thank you Darlene! I agree with you about the difference in public. Everything seems to speed up and become worse and so embarrassing!

  • nanarides62
    1 year ago

    Hi all. I am new to this board, no diagnosis yet. I posted a reply after Sandy’s posting almost the bottom of this topic and got to thinking that since it is attached to an older reply, it might get buried before anyone sees it . . .
    : )

  • nanarides62
    1 year ago

    I should hear something over the phone tomorrow about the results but they didn’t schedule my followup appt. until January! However, I did make an appt. with a neuropsychologist next week who first diagnosed my depression and she will look at my MRI reports and hopefully can recommend a new primary care provider for me. And I am prepared to get a second opinion from another neurologist if need be. Thx for listening. I have felt so terrible this last year with various issues and just want some answers and/or diagnosis. I am actually grateful to the urologist who mentioned MS as a possible cause because I don’t think I would have connected the dots on my own. (p.s. I read the “odd symptoms” post and I too have had a few occasions where an area on my left thigh felt cold or sometimes wet! That was another aha moment when I read that others have experienced that weird sensation too!)

  • Devin Garlit moderator author
    1 year ago

    Thank you nanarides62! No worries. Did you MRI with contrast help them determine anymore? Have they considered doing a spinal tap? Always consider seeing another neurologist if they don’t have an answer or even have an answer that doesn’t seem right to you. Getting a proper diagnosis is an incredibly difficult issue for so many people who eventually get diagnosed with MS. Remember, not all doctors are great and not all are well versed in the latest information.

  • nanarides62
    1 year ago

    Update: Even my neuropsychologist said she doesn’t think MS, but definitely something neurological, like parkinsonism (not Parkinson’s disease) because of urinary retention/inactive bladder, and I should get a second opinion.

    Serendipity kicked in when I finally confided to a long-time friend about my issues and she said they just went through this with her cousin, who is in her 70s, finally being diagnosed with MS! She gave me the name of the specialist who diagnosed her cousin. I am seeing neuropsychologist again tomorrow and will see if she can refer me to the Neuroscience Center in Tacoma, WA, which is where her cousin went, but they require a referral.

    In the meantime, I got laid off from my job after 20 years but it may be a blessing in disguise as I was commuting 100 miles (round-trip) to work each day, up at 4:30 a.m., and that didn’t help my fatigue. I do have medical through my former employer through January (as long as I get my signed severance agreement, so am hoping to see specialist before then. Also, I was one of 7 who lost their job as they outsourced our work, so it had nothing to do with my performance as a medical transcriptionist (although because of cognitive issues, I was constantly forgetting my passwords for various log-ins at work, and would forget where I jotted them down. Finally started keeping all passwords on a desktop document. And I must admit it took me longer to learn and perform new processes in the last couple years.)

  • Devin Garlit moderator author
    1 year ago

    Thanks so much for the update nanarides62. So many of neurological diseases can mimic each other, it can be so hard to get a proper diagnosis. I hope you were able to get the referal to the Neuroscience center. As many opinions as possible is always the best route to go!

  • Robjaa13
    1 year ago

    I remember going to an information session soon after I was diagnosed with MS. I had a cousin who had MS, so I knew it could affect your ability to walk/move. I got the shock of my life when I learned it could cause you to have cognitive issues. Having limited motion I could deal with, but cognitive issues! That was a very hard & bitter pill to swallow.

  • Devin Garlit moderator author
    1 year ago

    Thank you Robjaa13! I agree, and it took a long time for me to find any information about it being an actual problem!

  • Nancy W
    1 year ago

    I can identify with this. My dad had polio so I knew what it was like to not be able to walk. But I did not expect MS to take away my ability to work due to the fact that I couldn’t think straight.

  • Devin Garlit moderator author
    1 year ago

    Thank you Nancy W! Sorry to hear of our similarities, but I hope you continue to fight on!

  • Busykris
    1 year ago

    This was so similar to my story. Although i am still working in an office i choose not to dwell on what will happen later if and when this progresses. I am my only financial supporter, recently divorced and with my kids at home still. Yes, Just writing this scares me. But this Cog Fog is Real. Thanks for sharing with the world.
    Best of luck!

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Busykris! Best of luck to you!

  • debkelter
    2 years ago

    I too have these same issues and feel as though my brain has just melted away over the past few years. (I was diagnosed in 1996) I can’t remember anything and I can’t even imagine how I ever did the job I used to do, which was working for a daily newspaper on a deadline! These days I can barely be organized enough to grocery shop! You are so right, you just can’t remember a damn thing any longer and not only is it frustrating for you, but for those living with you and for that matter, those having the conversation with you at that moment! How many times has my husband said to me, “Come on Deb, I just asked you about that,” or “I just told you about that.” I hate this!

  • Devin Garlit moderator author
    2 years ago

    Thank you debkelter! I too can’t imagine how I did the job I did. We most certainly aren’t alone though, it seems this is a much bigger issue than most people realize!

  • annetepper
    2 years ago

    Devin, Wow, reading your story was like reading about myself. Thank you so much for putting it into words. I’ve never tried to write any articles, so kudos to you! I was diagnosised in 88 at the age of 32 while raising 3 childrens and a husband with his own Company. I’ve have had some very good Dr.’s along my journey. I retired from a fast pace Company when I could no longer handle the busy pace. The Company was great, great family support and laughter over my exerbations, language skills (or lack thereof). Lately I’ve begun to realize it’s no longer as easy to laugh off, it’s harder planning my day and keeping to it. Projects that I used to whip out scare the bejesus out of me. I don’t think my husband realizes that I can’t do what I used to be able to do, grocery shopping wears me out, playing with our Granddaughter wears me out. Packing and unpacking totally confuses me and we just moved a 5 bedroom house cross Country! Now, reading your article, it was like looking in the mirror. On our move, I totally forgot my account number from a bank I’ve had for 35 years and couldn’t access. I’ve come to realize that’s just one of many items I’ve forgotten. I’ve just not realize or accepted it until reading your article. Thank you for opening my eyes so now I will address it and make arrangements.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much annetepper. I’m sorry to hear that you have dealt with similar issues. But I find that accepting them and being aware of them allows us to better adapt to them, I like to think that we aren’t being stopped by this issues, we just have to make some adjustments!

  • zenhead
    2 years ago

    Wow, yeah, all of that, plus lassitude and muscle weakness. And I wish it was easier to share this with other people in my life, so they’d know a little bit. Thanks for finding the words.

  • Devin Garlit moderator author
    2 years ago

    Thank you zenhead! Feel free to share this with the people of your life, I hope that it can help explain our issues to other.

  • RuthGeller
    2 years ago

    Hi Devin – I was diagnosed with MS for more than 30 years. And, I could detail my handicaps; my problems with mobility, memory, cognition, spasticity, pain, tingling, loss of control of bladder and bowel, walking, seeing (just to name a few).. What I’ve learned over these past thirty years is the benefit of using the power of my mind to develop the alternative and complimentary skills and disciplines needed to improve focus and concentration; to be able to strengthen deteriorating muscles while trying to improve balance and control; making the choice and having the intention to be the best I can be within the parameters of somewhat overwhelming limitations. I’ve stopped expecting my friends and family (who love me); my social or business acquaintances (who appreciate my social or intellectual abilities) to fully comprehend my symptoms. If I tell someone I have a backache, they fully comprehend what I’m saying. Whereas – if I say I have weird sensations or if I say I have unimaginable fatigue, their perspective is very limited. It is my intention not to lose myself. It is my intention to be aware and mindful of what I can do instead of what I can’t do. I refuse to be defined by my MS chronic disease. So, it is my intention to focus on what is instead of what isn’t. I can quantitatively list all the things in life I can not longer do. I’ve learned to let go of that because it doesn’t help me one bit. Where can my satisfaction come from? Where is the joy in my life? What makes me sit up and say: “job well done”. What helps me is being aware of others around me. What helps me is being in the moment. It is my intention to be the best I can be within the power of enormous limitations. I certainly have my “woe is me” moments. And when I start to falter I think of amazing people who have showed me the way. For the past ten years I have been a teacher of Mindfulness Meditation giving classes for the LI MS Chapter, The Parkinson’s Smithtown Center, a Nursing Home and Rehab Center for people with assorted neurological and orthopedic conditions. The ability of these handicapped people to move forward, becoming centered and balanced in spite of overwhelming odds is inspiring. I know that it’s not easy to fit into the norm of life, of work, of travel, of what is mainstream for most people. But the power of the mind is extraordinary. You owe it to yourself to give it a try.

  • Devin Garlit moderator author
    2 years ago

    Thank you RuthGeller!

  • cpcatchik
    2 years ago

    Wow, Devin, This could be me. I’d been an IT professional for almost 40 years. Solving complex infrastructure, business process and coding problems for Fortune 50 companies. I was an enterprise architect when I first started noticing I had trouble grasping concepts that had been easy a year earlier. I hadn’t been diagnosed yet but had walking and gait issues. Then came the diagnosis in 2010. I, like you, figured I could find solutions to my mobility issues. But the cognitive issues were subtle and embarrassing. I’d attend meetings and read my notes later and had no memory of the topic or the discussion. I’m sure my co workers noticed but never said anything. It was almost a relief when my job was eliminated in 2015.
    Since then I feel like I’ve lost myself. I retired early because I could, but days of leisure when my mobility issues hamper my ability to travel and do normal things are not fulfilling. Yes, I can read books, catch up on all the TV shows I couldn’t watch while working, and am a volunteer for a group that counsels small businesses. I try to get involved with every social activity in my community, and serve on the board of governors. But I don’t know this person that I’ve become and find little satisfaction in these things. Every day is a battle. And while disabled, I’m still mostly mobile, can drive, and use a mobility scooter for distances. It could be so much worse, which frankly, scares the bejeezus out of me. But a shower and feeding the pets can take an entire morning. A trip to the grocery store is like running a marathon. Then I’m too exhausted to cook the meal. This leaves almost all the cleaning and cooking to my husband, who has his own health issues. I don’t think most people understand how awful this disease is. I hope every day that better treatments are coming. I take a DMD, and my neurologist tells me I have no evidence of active disease, but clinical signs and worsening disability are different. Hang in there…all of us are on this terrible journey together.

  • Devin Garlit moderator author
    2 years ago

    Thank you cpcatchik, my heart goes out to you. It sounds like our stories are extremely similar. We’ll get through this though!

  • Julie
    2 years ago

    I can’t remember if I had already commented on this. OMG this makes me crazy! I see my neurologist tomorrow and have this written down to discuss with him. I have been in the middle of a conversation and forgot what I was going to say. Embarrassing.

    I also have started to forget words. Words I should know. I will ask my daughter, “what am I trying to say?” I’m sure I sound a bit crazy but it’s maddening!

    Of course, I just turned 58 on Saturday so maybe I can lay a lot of the blame on age? I hope. It could be a combination of the two. I just don’t think that’s old enough to blame age. But neither is my stumbling walk. Age or MS. I think that’s the question of the day.

  • Devin Garlit moderator author
    2 years ago

    Thank you Julie! I hope your appointment went well! I have to write down questions before hand too, I also often have someone come along to help and remember the answers!

  • Kym
    2 years ago

    I am so having the people in my life read this article Devin.
    Thank you for an excellent explanation!

  • CatMom
    2 years ago

    Devin, thank you for the very thoughtful article about cognitive issues. I’very been dealing with the same things for a number of years myself. It’seems particularly difficult to have friends and family say, “oh, that happens to me, too.” I never quite know how to respond.

    I envy your ability to write articles. I have never been a good storytellereason and now I’must even worse. Keep writing on your good days for those of us that can’t.

  • leannhenshaw
    2 years ago

    I am wandering aimlessly down the same road that you are traveling right now, Devin, but I keep getting LOST! I am literally having huge issues with getting lost when traveling in areas that SHOULD be familiar to me.
    I have a GPS, which helps, …..most of the time. Nonetheless, I still frequently have to call my husband, in a panic, because I have lost my way. But I get SO frustrated with myself that I want to cry, sadly my antidepressant doesn’t allow me to do so.

  • Devin Garlit moderator author
    2 years ago

    Thank you leannhenshaw, I’m so sorry to hear that, but completely understand. That’s a big reason why I barely ever drive anymore. Which then in turn affects my independence. When I do drive, even if it’s a place I have gone for years, I’ll often still turn on the GPS. It’s definitely hard not to get frustrated and down on yourself. Remember though, you aren’t alone in this and remember it’s the disease, you can’t blame yourself for what the disease does to you!

  • ghostinside
    2 years ago

    Thanks, Devin. Your story and everyone’s here is very relatable. I was diagnosed with rrms a month ago when my vision became hazy. However, I was also having some memory and concentration issues but thought they were unrelated. They actually got a lot worse while I was on the heavy iv steroids. I don’t remember much from the 5 days in the hospital. While my neuro now says it was all “the disease”, I believe the meds were compounding everything. I am feeling closer to my old self after adjusting to anxiety meds and getting off the Prednisone taper.. or perhaps I’m just recovering.

  • Devin Garlit moderator author
    2 years ago

    Thanks ghostinside! I can absolutely understand you thoughts about the IV steroids causing you some issues. Memory issues could very well be the disease. That said, I do know how rough steroids can be, so I don’t put anything past them anymore. I know I am a crazy set of emotions when I’ve been on them. I’ve had some crazy moments when tapering on prednisone too. Glad to hear you are starting to feel more like yourself!

  • CGorney52
    2 years ago

    I have had Primary Progressive MS and was diagnosed Sept. 2014, not even 3 years yet. I am arriving at the age of 65 in August. My cognitive problems started about 2 years ago.
    The symptoms got increasingly worse in Jan. of this year. Devin mentioned that he was scared. Every time I do something completely abnormal I cry. This is happening so fast. Last night I was going to heat a frozen sandwich in the microwave. I read the directions and by the time I had my fingers ready to punch the numbers, I had forgotten the first step. I tried and tried to remember but I got frustrated and punched in some of the numbers and hit Start. Needless to say, I ended up with something resembling a rock. I threw it out and cried. I didn’t eat anything for fear of screwing that up. So many MSers had some time to adjust slowly. This stage just dropped right into my lap and I can’t assimilate this easily. I was always called a perfectionist, that doesn’t mean I was perfect but I pushed to do everything perfect (I think a bit of OCD was part of that). Can you imagine how this effected my emotions? I’m a wreck. I had to quit my volunteer job at an Assisted Living facility. I created a Country Store that featured craft items from vendors that I chose from Craft Fairs. It became a social area for the residents. I put my heart and soul into making this something for the residents look forward to. I got more volunteers so it could be open 5 days a week. Just as I thought it was a viable part of the facility, my mind started quivering and I couldn’t work with numbers, they looked like jibberish. Four years of gratifying work, done. I tried just working the hours and my husband took over all my other tasks. that didn’t work, I started having difficulty talking and standing. I had to quit. I left all the information needed to keep the store open and said good-bye. Losing my cognitive abilities was catastrophic for me. My self confidence went away with my dignity. I am so relieved to hear that others are like me. But I am also sad that others have to endure this thing. It did humble me, if that’s a bright spot. As with Devin, my communication & writing skills have suffered only a little bit. For that I am grateful. Good wishes for all.

  • Devin Garlit moderator author
    2 years ago

    Thank you CGorney52. While I am sorry to hear it, I very much appreciate you sharing your story. Cognitive problems are too often a symptom that people don’t know much about, and it is refreshing to see others tell of their experience. I wish you well and thank you again!

  • Vicki
    2 years ago

    Devin, your article really hit home for me. I have had MS since 1991. Three years ago I began to notice the cognitive problems. I knew the areas I was having difficulties in and the testing confirmed what I suspected. I had to retire from teaching because of the difficulties. My husband did not comprehend my problems until we were playing a game with with our daughter and son in law. They were all 1/2 to 3/4 around the board and I was still at the starting line. It was a game where you got hints and had to answer questions. There were so many questions about islands that when it was my turn they were joking about islands. I thought the answer involved an island. It didn’t. I looked at the board and said this is the MS. I think my husband could see what I meant.. I have found ways to some what compensate for the deficiencies. Keeping a positive attitude and not getting upset with myself when I have problems has helped. I use the notes on my IPad, my calendar , and a password app which really help. Thank you for sharing your insight on this MS difficulty.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Vicki! Sorry to hear of your difficulties, but so happy to hear that your husband is starting to understand. I think it’s similar for many people, all it takes is one incident and then it clicks, they can finally understand what we’re talking about! Glad you mention not getting mad at yourself, it’s so easy to do, but so important not too! Thanks so much for sharing with us!

  • Sandee Hess
    2 years ago

    I had 35 years of diagnosis of chronic depression of all types. 7 years ago I found out that I have had MS all these years. There were episodes that could have been diagnosed but weren’t. Looking back every episode was preceded by an awareness that I was.unable to do something I could do before
    I have been told I am atypical and was difficult to diagnose.
    This sounds strange but I was actually relieved to know I was crazy

  • Devin Garlit moderator author
    2 years ago

    Thank you Sandee! Doesn’t sound strange at all! I have known so many people who have been misdiagnosed or had their diagnosis take a long amount of time. It is always a much better feeling to know what wrong than to not!

    In fact, in our own yearly poll, 42% of people answered that they were initially misdiagnosed: https://multiplesclerosis.net/infographic/ms-in-america-2017/

  • reddog20
    2 years ago

    I also had symptoms starting back in 1983. I’m have also been considered symptom free as long as I stayed on a salt free diet. You see with me it began from msg that they put in Chinese food. It attacked my central nervous system. From their it turned into just salt. So basically Iv pretty much symptom free until recently. I also realized I can no longer think the way I used to. After reading this article I just finished my first appt with a neurologist.

  • CousinJen
    2 years ago

    Devin, your writing has given me much greater understanding of my cousin’s behavior and now I will be better at advocating for her within the family. Thank you so much!

  • Devin Garlit moderator author
    2 years ago

    THanks so much CousinJen! I really love hearing that! These issues can make it very hard to explain to others what we are going through.

  • ElleKay
    2 years ago

    This. This right here. I can relate more to this article than to anything else I’ve ever read about MS. I was in college when I was diagnosed. I’m now 34. I haven’t been affected physically too much, but I struggle with cognitive functions on a daily basis. And it’s the hardest thing in the world to cope with. I can’t explain it. I can’t find the words. I can’t function, but I look perfectly healthy. I run half marathons, but I can’t focus and get anything else accomplished. I’ve been struggling a lot at my job and it’s making me feeling incompetent.

    I love this article more than I can express. Thank you so much for this.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much ElleKay! I hate that you deal with this, but I do always feel a bit better knowing I’m not alone!

  • ElleKay
    2 years ago

    See? I messed up my words there at the end of that first paragraph.

  • kathyS
    2 years ago

    Devin, I understand exactly what you are talking about! the Cognitive problems was the reason I had to retire, combined with being easily stressed. I was off work for three months and returned, As usually no one covered by cases while i was out so I returned to a huge backlog. But a job i had work in for 20+ years and i discovered i could not remember how to do the basics, no auto pilot working for me. I was researching every task to perform. I was a paralegal,,,. scary. within three days I was really stressed out and with a client when I had a big relapse right in front of them, I had a stroke 15 yrs earlier and at the end of the stroke scare i have a laison, right in my cerebral cortex, which control cognitive function. ALL my words came out of my month all mixed up. I don’t know who was more frightened me or the clients. I said my good bye and dropped off the paperwork in the mail room and left work, desk unlocked, computer left on and I went straight to my neurologist office, was sent to the hospital for MRI…. we had to determine if i was having a stroke or relapses. It was a relapse, took memory speech, cognitive functions. It took months to recover, and it was not a full recovery. Each relapse seems to take more aways. but that is My big stress related relapse… acts like a stroke. I was taking to my mother about losing my memory and she told me yes she knows, I was so mad why did she not say something to me about it if she had been noticing it, she told me i was not ready to hear about it. What??? I hope other people that are having difficulties family and friend bring it to their attention or love ones attention. Looking back i realized I was more aware of it then I was ready to admit… it started with picking simular words, but not the right word. repeating myself. Now Cooking. i cannot leave the kitchen without a timer in my hand to remind me im cooking, i forget i started dinner. i LOVE TO COOK TOO. So I find myself making meals in the crookpot or that left overs makes a series of different meals so I limit the risk of burning down the house..LOL just kidding. My husband bought me a rice cooker, i still dont like it but i use it, that my favorite dish to burn. I have discussed this issue with my neurologist but she has never referred me for any assistance or therapy for it. what is out there that can help??

  • CenteredNow
    2 years ago

    Thank you, Devin. I wrote an article on this topic for Momentum magazine a few years ago – http://www.momentummagazineonline.com/lost-in-thought-when-cognition-changes/ – It’s so under-reported and definitely under-treated. I struggle with my work, and even with the disability company who wants me to do a physical eval to stay on my policy. They don’t do any cognitive evaluation. It’s ridiculous.

  • B.L.
    2 years ago

    Devin, I am SO glad that you brought this up! And while I’m trying to make many notes in my head about what you wrote…well I forgot my sharpie …you’re not alone…I lost a great professional career that I went to a prestigious university for when I was only 34? I think anyway. The cog fog was actually one of my FIRST symptoms and my speech; I sometimes try to speak and the words just do not come out right! After losing my husband ( not lucky like you to have such an understanding spouse) of nearly 15 years together; I always thought, well, I’ll have my career. Nope; it and everyone I knew were gone in the blink of an eye. My most recent symptoms have been flashing lights in my right eye; and I have lost AlOT of feeling in areas of my body while others are plagued with awful pain and despair. The relentless bladder issues; bowel issues; it’s a mess when it’s all flared up at once and if I recall correctly, you and I are about the same as in the Secondary Progression of MS. It’s scary, I’m outdoors right at this moment and forgot why I even came outside! Oh yes! I just now remember, it’s cool here today and I am not in a hot GA sweat! Lol!
    Trust me, the pin thing, passwords, I too forget, every month when I go to pay bills; I’m always having to reset that password. And not just for one or two accounts, I’m talking everything! So please feel comforted that you’re not alone in this fight & you write great articles! My mind can follow them just fine

  • annetepper
    2 years ago

    Fully understand B.L. on the password thing. I now write down in a notebook all my accounts and passwords so I don’t have to redo them on a monthly basis!

  • kathyS
    2 years ago

    bl… iM HAVING THOSE PROBLEMS ALSO, i SET UP BILL PAYING ON MY COMPUTER, TO AUTO PAY MONTHLY BILLS FROM ONE ACCOUNTS AND HAVE MY PRIMARY BANK ACCOUNT SET UP TO MAKE SURE THE BILLS ARE COVERED IN FULL FOR THAT ACCOUNT PLUS EMERGENCY MONEY. i SET THE GAS AND ELECTRIC ON PRORATED RATES, AND BY THE WAY, IF YOU HAVE NOT DONE IT MS ALLOWS DISCOUNTS ON GAS AND ELECTRIC FOR DISABILITY DUE TO BEING HEAT SENSITIVE. Ive have my back notify me of activity of $5 or more and provide me with daily balance so i do not loose track of money. I keep an address book with all my passworrds and accounts in my locking desk so i have them. printout any online purchases i make etc…. printer and lists are my sharpy, and the calander on my phone. they have replaced all the post-it notes.

  • Devin Garlit moderator author
    2 years ago

    Thank you B.L.! I definitely feel comforted a bit to know that I am not alone! I hate to hear that others suffer though these issues, but it’s nice to see so many other people say that they understand!

  • pmm
    2 years ago

    Thanks for this timely (for me) post, Devin. Myself being a research scientist, your statement “All things that were pretty crucial to my career … if I could boil my job down to one phrase, it’d be “problem solving”: writing code or directing others to write code to solve problems. ” really resonated with me. I have been struggling w/ memory issues since my early-mid 30’s (I am now 51 yrs old). Your descriptions are perfect characterizations of my own cognitive challenges. I’d like to ask 2 specific questions of you:

    (1) Was it the cognitive issues alone that elevated your diagnosis to Secondary Progressive MS, or were those problems just one component of other issues such as mobility problems that eventually lead to a “progressive ms” diagnosis?

    (2) Have you ever had a hippocampal volume measurement performed using MRI data?

    The state-of-the-art (according to my neurologist) for brain volume measurement is something called NeuroQuant. A few weeks ago, I learned that (quoting from my report): “Hippocampal volume is low at the 8th normative percentile for age without significant right-left asymmetry.” My neurologist seemed very sad to tell me this news, and I had done enough reading over the years to be aware of the implications. The gist of my question is: has anyone else had this MRI measurement performed when there was a concern about cognitive function, and was MS confirmed to be the reason for the brain atrophy? (Hint: I sure hope MS can be responsible, but I bought & read a copy of “Still Alice” in an attempt to face my worst fears).

  • CenteredNow
    2 years ago

    You are SO brave to read “Still Alice,” I cannot go there!

  • Devin Garlit moderator author
    2 years ago

    Thank you pmm! My cognitive issues were not my only issue at the time. They were a big part of it, but I also suffered from weakness and numbness in my legs and right arm, as well as bad nerve pain. As for #2, no, to my knowledge I have not had that measured. I do intend to read up and inquire about that now!

  • Eastwood7979
    2 years ago

    Could not have read this at a better time! I almost did not read it for it’s length. There have been times when reading a book I had to write down the characters and who they were and what they did. As you said I do not like rereading articles or books over and over but I could not not read this. Thank you so much for sharing your story! I had thought it was my age (56) or the 100 things that go through my mind just during daily living. No, this is much worse and when my husband mentioned the forgetfulness (he doesn’t like to say things that are apparent to him that will upset me) I knew there was an issue and I need to talk to my neuro at my next appointment. The clarification that I have the symptoms you do has given me the strength to notice this issue and bring it up to my doctor. Now I can without thinking it’s just me because it is me and I will have to learn ways to keep all the jumbling memories whether short term or long in order in many new ways and if I still forget I have to learn to not be so hard on myself!!! Thanks a great eye opening article.

  • Devin Garlit moderator author
    2 years ago

    Thank so much Eastwood7979! I always struggle with the length of these, I know if it’s too long, even I won’t want to re-read it! Thanks for sticking through this one though! Very glad to hear that you will mention it to your doctor!

  • sucorone
    2 years ago

    Devin, Thank you. I appreciate your informative info. I definetely have a bit of cog fog. At home, I have learned to embrace empowering and allowing the love of my life, hubby, more input & control. This coming from a control freak engineer, LOL. At work, currently as Business Analyst in non-life threatening work, I do the ‘best I can’. I make more (still few) mistakes than I use to, have developed double & triple self-QA checks but know the work clock is ticking. I too thought, when diaganosed 10 yrs ago at 48 yrs old, mobility would be my biggest challenge. Still very mobile but see the career/work world challenge loaming big.

  • Devin Garlit moderator author
    2 years ago

    Thank you sucorone! It’s been hard for me to embrace others, namely my wife, to handle more. It has been very helpful though! Glad to hear you have someone that can help out as well!

  • Stephanie J
    2 years ago

    Hello, Thank you for writing this article about cognitive issues and MS. I’m 37yr old and have been living with MS since age 15. I am also fearful of this part of the progression. Because my illness seems invisible most times it is so difficult to explain how I suffer without feeling as though others think I’m just lazy and an airhead! I’ve started noticing this in myself within the last 2 years and it’s so nice to have others to listen and help relieve the stress when others can’t because they just don’t understand. Thank you for sharing your story.

  • Devin Garlit moderator author
    2 years ago

    Thanks you so much Stephanie! I appreciate you taking the time to read and share your thoughts!

  • Mendezl
    2 years ago

    People just don’t understand cog fog. I always get people telling me things like you’ve mentioned in your post. You hit it on the head though with alot of what you mentioned. I forget what I’m watching just fast forwarding through the commercials. I used to read all the time and I haven’t finished a book in so long. I try to read but I just can’t concentrate or remember what I’ve read and once I’ve put the book down forget about remembering where I left off. I’ve had Neuro – psych testing and been told I test right at my age for memory problems and such. That further frustrates me. I’ve always been good at taking tests and I was well rested when I went to take the test. It wasn’t accurate to my reality so it didn’t help me. It didn’t help that it was sent to my neurologist. It is very frustrating. I haven’t been able to work for years. I used to write code too but I towards the end I would sit there not even able to get started. So I get what you mean by not feeling like the same person anymore when your brain doesn’t even function the same as it use to. It’s very difficult.

  • Devin Garlit moderator author
    2 years ago

    Thank you Mendezl! My neuro-pysch results were also pretty mixed. I’ve heard the same from others who have written me since this was posted as well (and I’d love to hear from others who have gone through it). My personal feeling on the matter, is that the the testing isn’t accurate, at least not for folks like us. It’s extremely frustrating!

  • meissie47
    2 years ago

    Thank you so much Devin. This has been very helpful. This is one of my reasons for going on SSDI. There are times when I do well like there’s nothing wrong with my cognition and then boom.

    It’s hard to find people that understand without the “Oh girl I’m the same way” so I keep it to myself. Thanks for sharing!

  • Devin Garlit moderator author
    2 years ago

    Thank you meissie47! Ugh, I know what it’s like to hear others say that it’s normal or that they know what you mean, it’s so frustrating!

  • Nahna
    2 years ago

    Thank you for your share Devin. This email landed in my inbox at the perfect time. Just yesterday I caused my family of 7 to miss a flight home from our first family vacation because I read our gate info incorrectly. I as the mother and wife had no-one you blame but myself. I have “issues” that are just ridiculous and it seems I’m not taken seriously. Yesterday was a huge eye opener for me and I intend to speak with my Neuro about getting some clarity. Thank you again for reminding me I’m not crazy and just because no-one accepts that “ms” is impacting the way I think and react doesn’t make it less real. I know I need help and I intend to get it no matter what.

  • Devin Garlit moderator author
    2 years ago

    Thank you Nahna, many of us have had trouble with being taken seriously because of our cognitive issues. I hope that maybe sharing this article can help your family understand that it is a real issue, that there is a legitimate reason why you have these problems. Thanks so much for sharing your experience, it’s always helpful for others to see that they aren’t alone.

  • meissie47
    2 years ago

    Naha…so true! I feel as if I’m not taken seriously either. I’ve been reading things wrong on a consistent basis here lately. Memory (I feel )has been really off more than the usual.
    Blessings to you!

  • RonRuns
    2 years ago

    Thanks Devin for sharing. I too am a software engineer with MS. Diagnosed just three years ago but stopped working a year an a half ago because of excessive fatigue and cognitive problems. As for the cognitive problems, what I experienced was almost exactly, one for one, what you wrote except that I did not notice the long memory issues, just short term.

    After several months of leave from work, I attended a return to work program at the local occupational rehab center. There I consulted with a work therapist and a psychologist. The meetings with the psychologist were very frustrating to say the least as she tried to convince me that my symptoms were from anxiety. I didn’t think it was nor did my wife.

    At the same time, independantly from the rehab center, I did a full-day cognitive evaluation with an experienced neuro-psychologist. His evaluation established that I indeed had cognitive problems.

    With symptoms like these, I questionned myself every single day. On a good day I thought that I was just a wimp or was just imagining things. On a bad day, I questionned how I could ever think that. Back and forth for a whole year.

    I attempted going back to work last September on a gradual return: 2 days a week up to 4 days a week over 9 weeks. It was very hard: took naps one to three times a day and was exhausted at the end of each day. I had a relapse at the end of december and was off again for three weeks after steroid treatment, etc.

    And, believe it or not, at the end of january I started to feel much better! Not 100% but a 70% which I take very preciously. Actually, the cog fog is much much better but there is still some fatigue I try to manage. From two naps a day, I’m down to one or two a week.

    Sometimes as I’m doing something, I realize how hard it used to be and I think of how crazy I was in questioning myself. Simple things were so exhausting such as packing luggage to go somewhere, following a cooking recipe, etc.

    To those that have the cog fog, don’t doubt it whatever some psychologist tells you. What’s my magic recipe to cure cog fog? Who knows, it just varies like everything else with MS. And unexpectidly it can sometimes better. I hope you become better too all of a sudden!

    Thanks again for sharing.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much RonRuns! You’ve done a great job explaining how our thoughts can flip flop back and forth, and how it can attack our confidence. A very good warning about psychologists too, you aren’t the first to mention having some issues with them. I’m very glad to here that you’re doing better at the moment, I hope it continues for you!

  • Kritty
    2 years ago

    Hi Devin, Thanks for writing a blog about cognitive problems. Only those with MS and have experienced any kind of cognitive issues understand what it’s like to forget things or complete tasks much slower than before. I’ve read and responded to some of your other blogs in the past. I love reading them. I have to admit it’s been awhile since I’ve been on here. The past two years have been extremely hard for me as well. Work was and has always been important to me and I used to love my job. Since my “new” supervisor transferred where I work he has made my life a living hell. I was driven to depression to the point where I would cry all the time and most of it was due to this supervisor who is determined to get rid of me. I’ve decided after 2 long years of being treated as if I’m too incompetent and made to feel like I’m not worthy of having a job, I’m retiring earlier than I had planned. Only because I can otherwise I would have to keep working and stay miserable. Life is too short to waste it on people like the ones I work for. I’m going to move on to a new journey or chapter in my life. One I can enjoy and hopefully wake up everyday smiling knowing I’m free of that daily grind. Thanks for the clarification of what it’s like to live in a fog or cloud that we sometimes find ourselves in and have to claw our way back out. Keep up the good writing.
    Bless your heart.

  • Devin Garlit moderator author
    2 years ago

    Thank so much Kritty! Sorry to you (and to all) for my delayed response. I do my best to answer each comment personally, it can sometimes take me a bit of time to do that though. I’m sorry to hear how the past two years have been for you. I am excited though to hear that you are starting a new journey! I hope you are excited for it, having less stress can really help someone with MS thrive and I hope that for you! Thanks again for reading and sharing your experience, it’s always appreciated!

  • 1jshoyx
    2 years ago

    You have written a more than accurate account of my daily struggles. As I read, there were some points that I felt like your words were my own. Thank you for validating so much of what I deal with everyday. This being such an invisible disease makes it seem as though I am just fine most of my days. But really, as I’m sure you’ve done, I pretend well. I don’t always read the MS articles that pop up on my email but glad I opened this one.
    Thank you for sharing your story.

    Angela

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Angela, not only for reading but sharing your experience too. This is a serious topic with me and it means a lot to me to hear that maybe I did it some justice!

  • ggoa0b
    2 years ago

    Hi! Want to say, as a journeyer with MS for 21 years, I really don’t agree with your statement: ” The issues that I have are ones that I will always live with.”
    I believe our futures lay with stem cells, and the reversal of disability!
    Keep the faith

  • Devin Garlit moderator author
    2 years ago

    Thank you ggoa0b and LuvMyDog! I appreciate both your responses. I do believe there is a future, where maybe they can regrow myelin. I don’t think it’ll be in my lifetime or be able to help me. I do have high hopes for it, just not for me. These days I try to raise awareness and have hope for the future people that get MS. The next generation that gets the disease is every bit or even more important to me than mine. I don’t see it as pessimistic, for me, it’s just me trying to be real with myself. That said, if living with MS has taught me anything, it’s that anything can happen, so who knows!

  • Karsten
    2 years ago

    Just wanted to tell you that your article made me so happy. Not that cognitive changes are anything to be happy about, but it was just such a relief to finally read something about cognitive change that I can relate to. Nice to know that I am not alone, so thank you for telling your story.
    PS I’m from Denmark, so now you know that your writing travels all around the world 🙂
    /Karsten

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Karsten! It’s very much a relief to know others understand what I’m talking about!

  • Jim_M
    2 years ago

    This article is spot on and addressed most of my changes in cognitive and memory functions. It was a relieve to read this and recognize that others are having the same problems.

    MS has taken a lot from me physically and left me in a wheelchair. However, the cognitive changes and fatigue have become the most annoying and debilitating MS symptoms. The loss of cognitive and memory functions is now my biggest concern and has nearly destroyed my ability to work. I am a civil and environmental engineer with 50 years of experience. My ability to work and solve complex problems was the central element to my career and this is nearly gone.

    My cognitive and memory problems are complicated by the fact that I am 75. My memory issues are probably the result of both MS and ageing. I am certain that MS is the dominate cause of my memory and cognitive problems. Many of my friends excuse my memory problems due to my age.

    Like you I am lucky to have a supportive wife (we will celebrate our 50th anniversary this December) and I will share this article with her to reinforce her understanding of my biggest MS concern.

    Thank you very much for this article.

  • Devin Garlit moderator author
    2 years ago

    Thank you Jim! I find it’s such a complicated and difficult set of symptoms to try to explain at times, so to hear from others that I did even a decent job means a lot to me. I hope others read it and realize that it’s not the same forgetfulness that they experience! Thanks so much for reading and sharing your experience here, it’s helpful to many to see that this is real, that there are others going through this!

  • Chris
    2 years ago

    Devin,

    Long time reader; first time wrighter…

    I was diagnosed at the age of 18 in 1996 at the height of invincibility; in the summer between high school and college. After my diagnosis, I came to grips with the eventual physical limitations pretty quickly. Those weren’t a concern of mine. What I did fear, though, were the potential cognitive issues.

    I, much like yourself, have found a useful crutch to get me back in the game. You use a sharpie: I use a blue gel pen. I always have crap written up and down my left arm, on my wrist and on my palm.

    “What’s written on your arm? Why do you have it there?”
    “It’s my little notepad. Kind of ‘handy’, don’t you think?” … as I show them my palm. And everybody gets a good chuckle out of it.

    Admittedly, though, I have transitioned from my hand to a 3×5 notebook that I carry around with me.

    My biggest roadblock at the moment is with conversations. When somebody and I are talking about Thing X (especially when Thing X is something I’m not absolutely familiar with), my thoughts, along with the conversation, seem to run in a Dream-Like state. I’m here… but I’m really not here. For the longest time I was trying to convince myself this was due to low blood sugar. I need a snack-bar, and things will get back to normal.

    The big snafu in this entire story is I’ve finally been provided the promotion I’ve been angling towards for years now. This is great, right? I still got it. I proved to everybody that I have the stuff that it takes. Remember be telling you that life got messy if I wasn’t on top of what Thing X was during a conversation? Well, it’s a new job! Everything is a brand-new Thing X!!

    I hate it when there are times that I fell stupid.

    I’ve lived my life longer with MS than I ever lived without it. I’m sub-40, and I can’t mow the lawn any more (even with one of those fancy self-propelled mowers), but I’m ok with that. However, I get down-right aggravated when I can’t keep up with the bug-guy when he tells me he has to spray some new stuff because of Thing X!! AARRRGGGHHHH!!!! I can’t stand Thing X!!! Where’s my notebook? Let me write this down!!

    Devin, hearing you articulate it made the fog clear a little bit. It’s good to know there are others who also live with something that I really don’t want to admit to myself. The fog is here to stay. There will always be a new Thing X. Your blood sugar is fine. Put down the snack bar and start taking notes.

    Oh, right! Note to self: Make a note about buying more notebooks.

  • Devin Garlit moderator author
    2 years ago

    Thank you Chris! Thing X is always pretty elusive for me too! We just have to tell ourselves that it’s ok and that we can work around it. It’s all about adapting, right? I’m also closing in on that lived longer with MS than not milestone. Pretty crazy when I think about that!

  • Bblue
    2 years ago

    So true! I make sticky notes to myself, then I forget to read them. Or I get up knowing I have an appointment and while having coffee I totally forget about the appointment.
    And conversations…..Sometimes I feel like a moron! Can’t bring words to the front of my mine so I can speak then– stop in the middle of a sentence and then start talking about something else. It’s really embarrassing. I also, don’t feel like people w/o MS understand. I’ve tried to explain it but they don’t listen. Truly it’s better to say nothing! Thank you and everyone on this site for your stories. It helps to know that there are people who get it.

  • BlazeMom
    2 years ago

    Devin,
    LOVED your article! It fits perfectly with my life. I was dx about 21 years ago at the age of 32. I’ve got 2 adult children that helps out a lot. But the worse thing is I lost my husband to cancer 8 years ago so I’m going through all of this on my own – it sucks. So really appreciate and love your wife for going through this with you!

  • Devin Garlit moderator author
    2 years ago

    Thanks so much BlazeMom! I’m sorry to hear you are going it alone, remember that you always have people here when you need to talk! Many of us are going through these same problems. Thanks so much for reading and sharing part of your life, that’s the kind of thing that makes this site so great!

  • mamak1118
    2 years ago

    Thanks, Devin, for your openness about your cognitive issues. I actually saw a psychologist who tested me for cognitive deficits, and he told me he thought I was fine and that it’s stress-related. He actually works with my MS specialist, so I believed him (and still sort of do). But I can be talking about something and just stop mid-sentence because I’ve forgotten what I was talking about. If I’m doing something or thinking something, and get interrupted for even the smallest fraction of time, I end up completely lost. And the other day, I forgot my daughter’s birthday. Today I was sending her a text, and I thought: are you sure that’s her name? It just didn’t look or sound right. So I understand what you’re going through, how disheartening it can be to know that you’re just not as “there” mentally/intellectually as you used to be. Thanks again for sharing!
    Kristi

  • Devin Garlit moderator author
    2 years ago

    Thank you Kristi! Ive heard some mixed stories come out of those tests from different folks whove reached out to me. A very good number of them have had the same result as you and most aren’t convinced. Regardless of the true cause, the symptoms are scary and frustrating. Thanks for sharing your experience with them, it’s great to see everyone else opening up!

  • Lisa
    2 years ago

    This piece of your article say it all for me. “I often feel like I’m not even me anymore. How can I be me if I no longer think the same way?” Cognitive issues were the reason I had to leave work as well. I feel sad and a bit annoyed when I try to explain my struggle with these issues and well-meaning, quite lovely people try to make me feel better by telling me all the things they forget and that it’s not a big deal.

  • Devin Garlit moderator author
    2 years ago

    Thank you Lisa! So sorry to hear you have had similar experiences. I really hope a lot of people without MS read this so they can understand that it’s not the same forgetfulness and that trying to minimize it by comparing it to theirs is not helpful at all. Thanks so much for sharing your experience here, very much appreciated!

  • Intimid18
    2 years ago

    I am both pleased and frustrated with your article. Because you described me to a tee. The only difference is that I am still working. I was diagnosed 5 years ago. The last year and a half have been mentally tough. Some time last year, I suggested to my wife that we watch Guardians of the Galaxy. She informed me that we had already seen that movie. I didn’t remember ever seeing it. Thank you Devin for telling your story. I take great comfort in knowing that it’s not just me!

  • Devin Garlit moderator author
    2 years ago

    Thank you Intimid18! It is most definitely not just you! I’ve gotten a tremendous response to this article, showing me that there are a lot more people with these issues than even I realize! We are most certainly not alone!

  • patrice59
    2 years ago

    I am fortunate as I don’t seem to have cognitive issues. Anything I sort of have can be attributed to age and possibly not enough social interaction. That said, there are some small things here and there. I live with my sister and her husband and do not mention even the possibility of cognitive issues because they go into “worst-case scenario” thinking at the drop of a hat. (And isn’t that a strange phrase, “drop of a hat”?) I am disabled physically, but still quite independent. I know they care–a lot–but I am the one who lives in this body and knows better than anyone when I have real issues.

  • Devin Garlit moderator author
    2 years ago

    Thank you patrice59! I completely understand that worst case scenario thinking, I’ve had some family act the same exact way! It can be a tough thing to live with!

    I actually looked up the phrase “drop of a hat” and it apparently was used because men would drop their hats quickly o be able to fight.

  • wmommy22
    2 years ago

    I am so glad i just read this article. I was diagnosed with MS last year after going through 3 weeks of speech,tremor,and other issues. My biggest issue for the last few years has been this thought that i was going through the early stages of Alzheimers. I would forget things so easily,i would be talking to someone and just stop because i couldn’t remember what i was talking about,i would go to get something,and then get to the room and not remember what i went for. I was so glad to see this article because it explains so much of what i’ve been going through. And i finally can see i’m not going crazy because these things would happen.

  • Devin Garlit moderator author
    2 years ago

    Thank you wmommy22! Yours is a very common issue because so many places don’t talk about these issues. Some doctors aren’t even fully up to speed. Most of the time, they are legitimate issues related to MS though. They can be extremely scary though! Thanks so much for reading and sharing your experience, I very much appreciate that!

  • Marcie Kim
    2 years ago

    Thank you for this, Devin! My husband has had a very similar experience – and like you, he and I always thought the REAL risk to his quality of life was walking. Well, we were naive. He was an aerospace engineer with a master’s degree and a great career, so it has been a really tough transition to “early retirement”. Thank you for being willing to share your story and educate others about cognitive changes.

    P.S. Hug your wife and tell her it’s from her ‘sister’ in this crazy journey. 😉

  • Devin Garlit moderator author
    2 years ago

    Thank you Kim! Very sorry to hear about your husband, it definitely sounds like we have had some very similar experiences. Please tell him to reach out to me if he ever wants to talk or vent!

    I certainly will, I try to mention and involve my wife here whenever I can, you guys have a tough and often thankless job!

  • 1mnccej
    2 years ago

    This article is so spot on it is almost scary! I have had MS since 1985 but have only struggled with cognitive issues for the last 3-4 yrs. I am a nurse and still work FT from home as a nurse reviewer and put in many extra hours checking and rechecking my work. Its so strange-I remember some things so clearly and others are just gone! I am recently divorced with an 18 yr old son and scared to death how I will manage once he leaves home for college.

  • Devin Garlit moderator author
    2 years ago

    Thank you 1mnccej! I very much understand, it’s easy to get worried about the future with these kind of issues. It’s extremely scary! Remember that you have MS so your are a warrior, and you’ll be ok! I always feel like MS tends to hit the very toughest of people! Thanks so much for sharing your experience and your concerns, I’m sure many readers share them!

  • 2 years ago

    Wow, do I hear you. i had to leave my job in E-commerce and customer service due to fatigue, tho I know that I could not do the job now due to those same cognitive problems. I used to write a lot, for my own pleasure and in various blogs and such. These days, stringing together a sentence can be truly frustrating. One of those symptoms people know little about.

  • Devin Garlit moderator author
    2 years ago

    Thank you so much zenhead. I completely understand. Very much appreciate you sharing your experience, all of these issues are not discussed enough.

  • Missievette
    2 years ago

    Devin, I so much appreciate this article. I recently entered the workforce, attempting to work part time at a position that ordinarily would be easy. What you mentioned in the article about cognitive issues really hit home, especially the ability to concentrate and pay attention. I will ask my daughter to read your article and hopefully she can somewhat see what life looks like when we are fortunate enough to live for years with this ridiculous disease. She’s grown up watching me struggle to work, dress, swallow and all the other things that go with it. Sometimes she gets a little frustrated when she sees me still try to work; she is now 28 years old. – Yvette

  • Devin Garlit moderator author
    2 years ago

    Thank you so much Yvette! I really hope your daughter and anyone else you share it with will understand what it’s like. That’s my hope for this, to show what life is like with these issues for those that don’t understand. Thanks so much for commenting!

  • AngelaS
    2 years ago

    Wow. Devin, you could have been writing about my life. I was only Dx a year and a half ago, but in retrospect have likely been ill quite a while. Was a nurse. I haven’t worked since that 1st relapse then. And I am still trying to reconcile my deficits, my loss of who I was. Thanks for putting it into words.

  • Devin Garlit moderator author
    2 years ago

    Thank you Angela! Sorry to hear you’ve suffered with this too!

  • rgood
    2 years ago

    Thank you Devin for writing this. I will def share it with my famiky and friends.
    Im a newbie (12 months) to this new journey. No longer work mainly because of the cog fog.
    and the challenges of try8ng to be a ceo in an industry that is 24/7 and required my

  • Devin Garlit moderator author
    2 years ago

    Thank you rgood! I hope this helps enlighten your friends and family. This is a serious and common issue for so many of us, yet isn’t always talked about.

  • Dimitri
    2 years ago

    Yup. Fustrating!!

    It’s amazing how much we can change. I was sitting around one day helping my nieces with their homework. I felt so stupid because I was having difficulties remembering multiplication. That killed me.

    I was reading up on experiences on Ocrevus. Some people are saying that it has helped with their cog fog and their fatigue.

  • Devin Garlit moderator author
    2 years ago

    Thank you Dimitri! There is certainly a lot of hope with Ocrevus. I’ve read that it’s helped people in those areas too. In the years since Ive been diagnosed, there have been many new drugs and there will be more on the way. Even if Ocrevus isn’t of help to everyone, there is still good hope that something else will come along soon!

  • 2 years ago

    Thanks for this very pertinent post! I think we all have to deal with this in some sort of varying degree. And its challenging thats a fact. I was a banker for almost 20 years when I had to go on disability a couple years ago. I miss my “work family” so much. That has been the hardest part about all this, but I have to focus on what today will bring.

    I have learned to accept and be happy with what I am faced with every day now. As for some tips that help my brain stay active, I like to read articles or short stories. I also do a small crossword puzzle everyday. The NY Times has a daily mini puzzle I complete daily. (In under a minute sometimes! Take that cog fog!) Oh and i try to build Lego sets every so often, my favorite are Star Wars sets. We just have to do anything that will keep our brains active.

  • Devin Garlit moderator author
    2 years ago

    Thank you for sharing your experience Diego! I actually meant to talk about this in the article, but one of the most helpful things I’ve been doing is building Lego (I too am a huge star wars fan) and Mega Block Sets. One of my doctors suggested that and it seems to be very helpful! It also helps my hands, which often get numb and weak. In addition to that, I work hard at reading, even when it means re-reading things, I still gut through it! Thanks again for commenting, it’s very much appreciated!

  • Sandy Richardson
    2 years ago

    Thank you, for speaking the truth. It took me 2 days to be able to log back onto this site, kept forgetting my password and id. I am no longer able to work, I was a nurse. I have whole periods of my life missing. That is on top of not remembering things day to day. My symptoms started in 2002. Hyperreflexia and memory loss with double vision. Since then my diagnosis after MANY doctors across the country was – MS symptoms with no lesions. So treatment has been only symptom relief. Had new MRI last month, NOW they say I have MS with lesions. Set to see MS specialist May 18. In the middle of a bad relapse now. Back to using a cane, cannot drive out of town as I get confused, exhausted. Praying for some better relief from this new doctor.

    Sorry for the long post, I digressed from the original. Part of my flight of ideas. Thanks for listening and explaining about the cognitive issues.

  • nanarides62
    1 year ago

    Devin & Sandy, this is the post that made me take the step and register…I’ve been “ghosting” this and similar MS forums ever since my urologist mentioned MS as a cause for my inactive bladder & retention a couple weeks ago. I went to see my neurologist who has been treating me for the last 3 years for a familial tremor. When I first saw him, I also complained of occasional vertigo and balance issues. He ordered an MRI (without contrast) which showed several tiny areas of something in the periventricular white matter, which the radiologist noted was more than expected at my age. The neurologist said they were just tiny strokes basically and has had me take daily baby aspirin. Since I ruled out for Parkinson’s & apparently MS at the time, and there were no tumors, he suggested I see ENT about the vertigo/balance, but since it doesn’t happen very often, I did not follow through.

    When I presented with the bladder dysfunction and also mentioned my sometimes now debilitating fatigue and depression (I was diagnosed with depression/anxiety/ADHD about 10 years ago and take bupropion), the neuro poo-pooed the fatigue/depression and told me to see my internist about it. But he did order another MRI, this time with and without contrast . . . I am having it tomorrow. I have felt “off” and “not right” for the last couple years now and was shocked when I entered so many symptoms from the list setting up my profile for this site!

    BTW, my internist also poo-pooed the increased fatigue/depression and basically told me to think positive and that at my age of 62, I can either pull out of it or continue spiraling down and never get out–needless to say, I am going to find another primary care doctor)!

    Sandy, you apologized for YOUR long post! Look at mine! Just so much to say right off the bat. Take care.

    Anyway, I have found

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Sandy. I’m sorry to hear of your issues. I hope your new specialist will be helpful. I have heard from numerous people who have had MS symptoms with no lesions, only to get them later. I hope that, in the future, doctors will be more understanding of the fact that not having visible lesions doesn’t mean that you still don’t have to treat the disease. And dont feel bad about a long post, make them as long as you want! I often will have a flight of ideas too, and if I dont get them out, I’ll lose them! Thanks again for sharing your experiences, it’s always helpful to hear from people and it’s useful for others to see as well!

  • qvh5op
    2 years ago

    Thank you so much for writing this article. I have been trying figure out how to explain this to my friends and family, this is better than anything I could have done.

  • Devin Garlit moderator author
    2 years ago

    Thank you qvh5op! I hope that sharing it with them is helpful!

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