Is MS catching up with me?

I was diagnosed with MS in 1973 right after I turned 24. Back then there was little talk of various kinds of MS. I simply knew that some people were completely disabled by the disease and some were not.

As it turned out, I knew a number of people who had MS. (The woman who lived next door to my parents has MS. Her case seemed to be serious but not totally debilitating. A girl I went to school with had a very serious case and died from complications in her 40’s.) I was affected by my symptoms: numbness, MS hug, blurred vision, clumsiness in walking and some numbness in my arms and hands that caused me never to volunteer to carry the good china. However, I was not disabled and my wife and I went on with our lives. We bought a house, had two kids and I advanced in my career as an educator.
I taught English for 16 years, became an assistant principal, then middle school principal with occasional exacerbations slowing me down and sometimes requiring rounds of steroids.

In 1997 I became a high school principal, possibly right behind air traffic controller for high stress job. I lasted three years, all of them laden with symptoms, but I pushed on and got treatment when I “needed” it.

I left public education in 2000 to take a job with a not-for-profit in education. Now in my 12th year in my second career, I’ve had a major exacerbation. Again with steroids this time by infusion, most of my symptoms have receded.

My vision however, (right eye) is effected and I have a nearly constant ringing in one or both ears. I continue to have numbness in my hands and feet but it isn’t debilitating. I don’t want to sound ungrateful for the unbelievably mild course that my MS has taken, but I have to wonder if my MS is catching up with me. Are there specific vision related therapies that I should be seeking?

Does anyone have a similar story? I’ve met a few people along the way who like me have no discernible signs of having an illness, but I don’t know how common our path is.

I also wonder if I can be helpful to others with MS. Once I was called upon to talk to another teacher who had just been diagnosed, but I was very conscious that my case was not “severe” and I worried that I might paint a picture that was not accurate.

Ok the English teacher says I’m rambling and need to stop writing, but having never shared all of this in writing and never to strangers, I couldn’t stop once I started.

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 (50)
  • jrzaf
    3 years ago

    Although I’m a new diagnosis, I could relate to this story. My case must be on the “less serious” side from what I read. I have no recognizable symptoms from the outside. On the inside, I feel like a lightbulb and suffer from fatigue, mood swings, numbness in my left arm and feet, brain fog, frequent headaches and other less interesting symptoms. I also take meds for Lhermitte’s sign and I pretty much buzz from head to toe all the time. I had an exacerbation that moved numbness to my feet late last year which really worried me. I work a very busy job and have a very busy household with my wife and three kids but I exercise a lot and haven’t changed my lifestyle much yet. My worry is what’s next. I dread change and worry constantly that I’m going to wake up and not be able to walk. I also feel guilty and frustrated that I’m doing so well on the outside but can’t describe what’s going on inside. I can only imagine the shock when my inside symptoms come to the outside and everyone wonders what happened. I still have people tell me to slow down and quit doing so much. Then in the next sentence blame my tiredness or pain on something I did. Anyway, I’m babbling. Thank you for your story. My greatest symptom is worry and that will never go away.

  • Meagan Heidelberg moderator
    3 years ago

    jrzaf,
    Thank you so much for sharing your story. I’m so sorry to hear of your diagnosis, but please know you are never alone. I’ll share what I think is a great article for you to read, if you are interested; https://multiplesclerosis.net/living-with-ms/accepting-unknown/. Just remember everyone’s MS journey is different but there is always someone who can relate. I’d like to welcome you to our Facebook page if you haven’t been already; https://www.facebook.com/MultipleSclerosisDotNet/.

    Thank you for opening up and being a part of our community,
    Meagan, MultipleSclerosis.net Team Member

  • Dave F
    3 years ago

    I was diagnosed in 2001 – dizziness, numbness in limbs, face, doublevision eventually as the year went on – and just lived in a total malaise while we treated with steroids twice in the first year. Despite years of relapsing, I have little accumulated deficit – so no one else would even know I have the disease. And in those remission periods I CAN feel quite good.

    In the last year, double-vision has worsened and I am actually experiencing fatigue in my limbs and weakness in hip muscles and back muscles. There’s a faint lack of clarity in my vision. My symptoms do remit for a few days before coming back, so it would appear that the disruption in the wires is due to inflammation cycling – not degradation of the axons per se (even if that is happening after each beating).

    So like you – it does appear to be changing. I switched to Tecfidera in October 2013 – and have been treated for 3 relapses while taking it faithfully. Arguably the least effective of the drugs I’ve been on. Prior to that I was on Rebif – in conjunction with an immunosuppressant called Mycophenolate. My doctor is trying his best to get me approved for using Rituxan for MS off label. His center swears by its ‘invariable positive results’ in the patients he has taking it. It just might happen now that my insurer has agreed with my doctor to cover his patients in Massachusetts. The only wrinkle is that while I see him 50 miles away in Mass – I live in NH and therefore have the same insurer but under NH address. Ah – American healthcare.

    Good luck and thanks for sharing.

  • MS1973 author
    3 years ago

    Thanks for sharing. My Dr.has put me on Amantadine for fatigue. It helps me.

  • MS1973 author
    3 years ago

    It’s interesting to see so many people with stories similar to mine. Cathie Patterson….I too was told not to have kids, but my two adult children seem to be free of this disease, and I have a beautiful granddaughter. I have semi retired since I wrote my original post but I’m doing some consulting and watching my grandaughter one day a week. On days that she is here I need to go to bed early but I think that’s more because I’m 66 than because of my MS. Still have blurry vision in my right eye since my last exacerbation. Hands and feet are numb most of the time but I have been able to take up walking again and the exercise is fantastic. Ironically, we have had to install a chair lift on our stairs for my wife who has arthritis and back issues, and I do use it sometimes when fatigue is a problem. Bottom line for me is I’m lucky, and as the song I sing almost daily with my granddaughter says, “The Lord’s been good to me.”

  • Ali
    3 years ago

    I was diagnosed by accident when my 2nd son was 2yo. I had a herniated disc in my lower back since I was 16. In 2000, I had an MRI on my lower back to verify. They decided not to do surgery until there was better technology (so I wasn’t in a wheelchair for life). Ten years later I had another MRI on my lower back. They told me to come back in for another MRI this time with contrast. I went in and they did my thoracic spine, which I didn’t understand at all. He saw a lesion on my spine and ordered a brain MRI and sent me to a Neuro to verify. Sure enough, I had MS. I went blind due to heat 2 times when I was 18 and have had numbness on my right side off and on for years. I went to several doctors and they said it was all in my head, nothing was wrong. Due to the numbness, I was given steroids after my diagnosis, but nothing since. I’ve potentially had MS for 20 years. Now I’m having some brain fog (not helpful when you are a homeschooler) and my gait has always been off. I’ve had more side effects from the different ms drugs I’ve been put on than I ever have with my MS itself. I’m just trying to do as much as I can now before I can’t anymore. I’ve been super lucky so far, but feel like I’m staring to decline. Hopefully I’ll still be good for years to come.

  • Cathie Patterson
    3 years ago

    Sounds exactly like my story. Diagnosed when I was 20, and am now 56, and I was told I shouldn’t have children, forgot for many years that I even had MS, had children, I have the right optic neuritis, constant ringing in both my ears, numbness in hands and feet, slurred speech in the morning. I think as I get older, the few symptoms that I do have are getting worse. I am just thankful that I am not in a wheelchair and still very active

  • i8xdxb
    3 years ago

    I was diagnosed in 1985 and have had a few problems over the years. Blind in one eye for a few months. Now that I am older , I am having problems with restless leg, fatigue , vertigo, brain fog and the osteoporosis that is caused by the MS. Actually I have been grateful that this is all I have had to endure. I had all kinds of problems with MS medications and will never try one again. Exercise and healthy eating helps a lot.

  • Judee
    3 years ago

    I’ll try to be brief.
    I was wondering the same, as symptoms have become worse over time but not particularly via exacerbations, as I know them.
    My MS specialist suggested that I view it as MS and the aging process meeting on the trail and proceeding together.
    He also said that in some ways MS patients can picture themselves as 10 years older than their actual age. This feels about right.
    I too am grateful for “mild MS”…although sometimes when I’m wishing I was dead it doesn’t seem so mild. Same time everyone is commenting, skeptically … “Well, you LOOK fine.” Thank you for being here, all of you!

  • 1rrvusi
    3 years ago

    I was told I had MS in my late teens. Worked in the HVAC construction field and ran my own company for 26 years . During that time I lost the sight in my left eye, developed foot drop and few times could not walk for periods of time. Been on meds for MS about 15 years now . Ended up selling my business and retiring due to MS. Without the stress and physical demands of my job (which I loved) I am able to adjust my life around my MS. Im still able to walk with a slight limp and a AFO brace on my left foot. Cant run up a roof or work all day in extreme temps like I used to but still in great shape physically just don’t ask me to carry the good china either ! LOL!!!!! For me MS has definatly slowed me way down but I have great days still also. Good luck to all!

  • Deb
    4 years ago

    I was dx with RRMS in 1998. Since I had a 2 yr old child (in addition to 2 teenagers and a 7 yr old), I was determined that I would get this last child raised before it “hit” me. And so it was. The two year old is now 19 yrs old, and although I managed 17 years with few symptoms other than tingling in my legs and feet, cog fog and balance issues while caring for parents, then patients with dementia, it has sat up and smacked me in the head about six months ago.

    I am still medication-free, although that will end here shortly. I use a cane, and a walker if I’m in public, due to my lack of balance and dragging right foot. I have a scooter for times when I’d like to be out for more than 30 minutes. Airports are the WORST – and the scooter makes it do-able.

    I think the part of it all that is the hardest for me is not the tipping over, falling, inability to “find” words, burning or tingling. It’s the incontinence. Once that becomes a “thing”, a person finds themselves with 3 different Poise pads; medium, heavy (overnight) and the full Poise underwear. I’ll be 61 next month – and dealing every day with being “wet” is humiliating and really difficult to accept. I can’t even run to the store (run. hahah! I amuse myself.) without making sure that I have on a full Poise underwear and that I’ve not drunk too much water in the last hour.

    It is my hope that your MS is NOT catching up with you. I hope my MS takes a break for another decade. I hope all of you commenters get an immediate cessation to your progressions. But most of all, I hope and pray that someday, someone will find a way to treat this very difficult condition.

    I miss my work with dementia patients. I miss being able to toss a ball with my grandsons. I miss eating and not dribbling food down my shirt. I miss being able to climb or descend stairs. I miss a lot. BUT! I still have a lot. Gotta look at that cup as half full. And I do. I wish you all health and happiness!

  • Jackie
    3 years ago

    I was diagnosed in 1985. I’m 64 now. For 20yrs I managed and with 3 kids almost no one knew I had ms. The last 10 yrs have been more of a challenge. The last year the hardest. I can’t transfer because my left leg is too weak.This makes the bathroom very difficult. I need help up and down and back onto my electric chair. Because of retention, I self cath every time. Also, I use all the Poise products. Sorry, but they don’t hold all that much and accidents are bound to happen. When we go anywhere, we look for a family restroom so my husband can help me. We don’t go many places that we can’t be home in a few hours to use the bathroom. My urologist has suggested an operation where I will have a stoma and bag on the outside of my abdomen. I am frightened of this but now wondering if this is my only option. Has anyone else had to make this decision? I think my MS has caught up to me. I have 9 grandchildren and I also miss running and playing ball with them or just being able to drive them somewhere fun. I do count my blessings but some things are just very hard and there doesn’t seem to be many answers.

  • Debof3
    4 years ago

    Just got out of the hospital 2 days ago with a relapse. I have had 2 strokes in the past so being incontinent plays a huge role in my life. I with the urges that come on and by the time I get to my wheelchair, I have either gone or can’t go when I finally reach the bathroom. right now I need assistance with putting attends on and off due to relapse and left side paralysis.Grrr.

  • chalknpens
    4 years ago

    I’m also an educator. I taught for twenty six years as a special education/general education classroom teacher. I studied hard, got a Master’s Degree before they were required, continued taking and then giving courses. My husband and I saw our parents through catastrophic illnesses in our late forties/early fifties, while parenting our youngest child and missing our older child’s children because we were so busy working and caretaking. When the parents were gone and the grandchildren were grown and our young son was in college, I had time to find out what had been going on in my own body for decades … the MRIs showed “innumerable lesions” and the second neurologist “didn’t expect to see me walking and talking and teaching and writing…” but I was. They called it ‘benign’ rrms … I called it early Parkinson’s, as both my parents had had that. None of my siblings had MS … I had three brothers and three sisters … none of my cousins had MS … I had dozens … I didn’t believe it was MS. I expected Parkinsons, and expected to finish my teaching career before it would hit, as my dad had finished his career as a firefighter before it hit … and my mom was in her late seventies when it. But I tried to comply … two neuros had said MS … I injected nightly for four years and grew steadily more anxious and depressed while doing so, convinced that I was harming myself with the wrong diagnosis and prescription. Whether it was the depression or the innumerable lesions in my brain, I began to experience serious cognitive issues … loss of ‘executive function’ abilities, and short term memory, my students’ names and profiles, my sense of time, my sense of direction, smell, taste and my formerly-strong verbal abilities. I had to resign two years before reaching the thirty two year mark that had been my goal. I became more depressed, finally saw a psychiatrist on my third neuros recommendation, began talk therapy with a psychogist and began an effective medication for depression. In my first two years of retirement, I gathered up a lot of my writings, journals, poetry, professional essays etc. and self-published five books. And then I was diagnosed with malignant melanoma. The next year was spent with twelve surgeries and hundreds of sutures, and I wrote two more books. And then …

    I opened a fabric/quilt shop. With the help of friends who were artists and creative in their own right, I developed a business plan: the central objective was one word, “HAPPY” I wrote yet another book, this time a prospective rather than retrospective journal. I created two characters named Henry and Helen, octogenarians still running a quilt shop and wooden toy shop … my husband and I, fifteen years into the future, trying to solve the mysteries of this 21st century’s challenges. It is, in essence, my promise that Rick and I will still be living our happily ever after for a few more decades. I invite you to visit my blog http://AtQuiltersQuarters.blogspot.com. Or my website, http://www.beyondoldwindows.com. Or my medical online journal https://terrysthoughtsandthreads.wordpress.com/
    My life is very different than what I had thought it might be. My grandchildren are both in college now. My son is a professional firefighter/paramedic. And I am no longer a
    medically retired teacher. I am a quilt shop owner. And though I miss my students and colleagues and my verbal fluency, I am happy. And life goes on.

  • But You Look So Well
    4 years ago

    Oh kittens, am I with you! I think I got MS in my middle twenties (in the early 1970’s) but wasn’t diagnosed until 1981. Had all kinds of interesting symptoms, dysesthesia, pain, numbness, tingling, visual problems, and a royal case of neurogenic bladder and IBS, not to mention cog fog, and the usual gait problems. Took at least three years from a very acute exacerbation to get a final diagnosis, with evoked potentials, lumbar puncture and all kinds of clinical test. (Hmm, doesn’t sound too mild, now does it?) Had a really serious exacerbation in 1992 that disabled me and saddled me with the need for a lot of assistive tech, like a short term in a wheelchair and a long term trying to find something to help me walk. Fortunattely, I started on Copaxone 15 years ago and it has been a miraacle drug for me But as you can tell from my handle, it’s still utterly invisible. I respond well to exercise and enjoy it, so I spend a lot of time at the gym. But I feel very lightly touched by MS even though I am secondary progressive. I like what the person said who said we are all getting old and that takes its own toll. Frankly, I think we get nowhere if we compare ourselves to others. We each have our own MS, just as we each have our own stories. As we say in yoga class, keep your mind on your mat. We are each responsible for our own health and for own way of dealing with the hand we’ve been dealt. Don’t let your own or other’s expectations of you dictate how you perceive yourself and your relationship with MS. YOu are your own unique person. I think I’m very lucky not to be terribly sick with this disease, but we are all lucky in our own way. And we’re all ;deeply affected by MS in our own ways too.

    Thank you to MS1973 for bringing up the subject. None of us are invisible here, and it’s nice to get a new way to look at what brings us together.

  • diotted
    4 years ago

    I was diagnosed in 2006. I had been getting annual eye exams for years and that year, my optometrist suggested that I get an MRI because the annual Visual Field Test had consistently shown an area in my peripheral vision that I didn’t appear to have any vision. Thankfully, he wanted to rule out potential damage to my optic nerve so on to the MRI I went. After my results came back, the optometrist referred me to an ophthalmologist because he wanted to have a specialist review the MRI. Once the ophthalmologist reviewed the MRI, he referred me to an eye specialist at USC who he felt would be better able to provide me with a diagnosis. In hindsight, I believe that both the optometrist and ophthalmologist had a suspicion that they were looking at MS but wanted to rule out anything else, so off to USC I went. When I met with the specialist, I told him that all I wanted was to know what was wrong with me; he responded “Oh, I know EXACTLY what’s wrong with you – You have MS”. I could barely believe my ears and started crying hysterically, because I had a younger coworker who had MS and in less than 3 years, she had gone from walking with a cane to being completely bedridden, so I was convinced that I was destined for a similar fate. Thankfully, the specialist took the time to provide me with the facts and he was convinced that I had had MS for over 20 years but that my version was not aggressive. He also mentioned that because my MS was so slow, the chances of my losing my motor skills were minimal. I will be 61 this Thursday and although I continue to suffer from cog fog, occasional relapses, occasional numbness in my hands and feet and need to work from home 100% of the time due to fatigue and dizziness, I am still glad to wake up every morning and have the full support of my family.

  • RN96
    4 years ago

    I got to the age of 40 before I found out I had RRMS. It was 1996 and the stress of raising 3 kids, finishing nursing school and preparing for the NCLEX brought all of those little “hidden” symptoms to the forefront. I took the NCLEX wondering why I was doing so. Would I ever get to actually function as an RN?
    Well, here it is almost 20 years later and my original exacerbation, which involved numbness on my right side from my ribcage to my toes and some visual changes, is a distant memory. Over the years I have seen several different neurologists, hopeful that they would remove what I saw as a ‘sword waiting to fall’ from over my head. No such luck.
    Since that time I have only had one other big exacerbation which involved a lengthy battle with optic neuritis leaving me with altered vision in my right eye that cannot be corrected. Since the beginning I have not only had a fulfilling career as an OB RN but have earned a Master’s Degree in Nursing as well and have educated many other people in the career of nursing. I have mild weakness on my right side, fatigue with a capital F, some balance issues, and, most concerning of all for someone in my position, mild cognitive impairment. But I can still play with my grandchildren with joy and abandon!
    Through it all I, like so many of you, have been waiting for the other shoe to drop while feeling like an imposter when I tell someone that I have MS. Where is my cane, my walker, my wheelchair they wonder?
    Well, now I know that there are many, many people out there like me who live with this disease every day and live it in their own unique way. We all have many things in common but just as many things that are unique to us alone. That is the way this oftimes “invisible” disease can be. We all just have to learn to live with it!
    I am currently off of medication but probably will be headed back to my old regimen of 40mg of Copaxone 3x a week. I stopped because I got tired of the regimen in the face of feeling like an imposter. But recent conversations with my care providers have made me realize that it is more important that I try to keep this slowly creeping disease at bay…or maybe I WILL end up with a cane, a walker, a wheelchair or most frightening of all…a brain full of mush. Sigh.

  • TSPARKS
    3 years ago

    You don’t know how much I needed to hear this! I was in Pharmacology when I had my relapse and was diagnosed early this year. I have now been able to get back in school (almost gave up) after an instructor looked down on my diagnosis and nursing school saying how hard it will be. I realized I can’t live in fear waiting for my next relapse. I have a 6 year old and 14 year old watching me. Being a nurse has been a life long dream for me. I have worked as a medical assistant for 15 years! I am in Med-Surg now and it is hard but hope it will be worth it in the end. Some days my body is tired and in pain. Or I get blurry vision. But all I do is pray. I started on Gilenya so hopefully that is the magic pill because I had a bad reaction to Copaxone. But thank you for your post.

  • Kelly McNamara moderator
    3 years ago

    Hi TSPARKS. Thanks for sharing your story and for being a part of our community! One of our writers is living with MS and works as a nurse practitioner specializing in MS. Some of her articles might be worth checking out, if you have a chance: http://multiplesclerosis.net/author/StephanieB/. Best of luck in school! – Kelly, Community Manager

  • diotted
    4 years ago

    RN96, I started to have some really bad cognitive issues and then my neurologist prescribed Memantine, which is typically used for Alzheimer’s patients for cognitive function and is starting to work for me – Might want to give it a try –

  • Emily
    4 years ago

    I can definitely understand how you are feeling. I am 34 and have had MS for 16yrs. with only needing steroid treatment when I was initially diagnosed; which was found early on so fortunately I had no permanent damage. I went 10yrs completely healthy and feeling extremely guilty even admitting to friends and associates that I did indeed have MS simply for the lack of symptoms. I was in complete denial about it. “You are very lucky” is what I heard for 10yrs. I felt like such an outsider…having MS but where do I fit in with everyone when I don’t look sick?? My work as a CNA was very physically demanding and it caught up with me after 8yrs. I had a minor relapse but did not require steroids. So here I am 6yrs. later being more limited with what I was able to before and feeling like a ticking time bomb. I try my best to take care of myself but it just feels like everyday I get a tiny bit worse and it does seem to be catching up to me.

  • Sue
    4 years ago

    I’m another person with mild symptoms. I’m 56 and was diagnosed on my birthday at age 54. I suspect I had it longer (as one neurologist said) but it’s neither here nor there. I have not had any relapses but have consistent symptoms such as balance, numbness in my feet, Lhermitte’s sign, dropping things all the time, forgetfulness. But I’m still doing everything I ever did and work out to improve balance. Because I’m also a diabetic and have hypothroidism, I have to be cautious about meds.

  • Pam
    4 years ago

    I, too ,, have had what most would call a mild case of ms. but I’ve had some issues. hospital er once,, steroids 2xs.. vision, walking numbness.. the usual I guess. and i’m afraid of the next set of symptoms.. will I not be able to walk at all? will I lose my vision, how much longer can I drive safely? always waiting for the shoe to drop..

  • north-star
    5 years ago

    This is way too long, I’m new here and MS1973 said he’s interested in stories . . .

    My first experience with MS was in 1976. I was 25 and under a lot of stress. My arm went numb one afternoon, but by the next day it was over. I worked in a clinic and got in to see a neurologist right away. He must have known I had MS, I had classic symptoms (numbness and Lhermitte’s sign) but he told me it was most likely stress and sent me back to work. Liar, liar.

    Four years later, under more stress, I had a severe headache and partially lost vision in one eye (it was as though a shade had been pulled partway down). I saw another neurologist and after an evoked potentials test he told me I most likely had MS but he couldn’t say for absolutely sure without doing an autopsy. Seemed a little drastic. At that time there was nothing to do for MS but go home and cope. My vision cleared up right away and my husband and I decided not to share the diagnosis with anyone. For another decade, MS symptoms came and went, denial was still possible and I looked so healthy nobody suspected a thing.

    (More difficult to cope with was Crohn’s disease– there are others with extra autoimmune diseases posting here. You’re not alone, either! There are lots of women with MS and IBD. It was a nightmare until methotrexate got it under control.)

    But MS caused me to lose a little ground every time I had an exacerbation and by 1990 disability was beginning to be evident. Diagnostic tools were better, there were treatments, so I finally got a definitive diagnosis, went on Avonex and told my family. For me, denial worked very well and I hated to come out of my closet. I knew I was so lucky I could keep my status secret, many people can’t.

    Years ago I read a book that has stuck with me, “Stigma: Management of a spoiled identity” by Erving Goffman (you can Wikipedia him and get the premise of the book and his research). There is, like it or not, a reaction to my situation from total strangers that I often can’t evade or ignore. I know I make some people uncomfortable as I hobble along and it’s infuriating sometimes: I have to go grocery shopping, get over it. Ignore me! Please don’t tell me about your aunt who died, or your friend’s uncle’s friend who went on an all-vegetable prehistoric diet and now runs marathons. Instead of saying what I’m thinking, I nod and thank them for being, or appearing to be, caring individuals. What I’ve realized gradually is how exhausting it can be to assume the persona of the kind of disabled person who is happy, happy, happy and can put them at ease. Is it my job to do this? Yes, if I want to have a good day, but it sometimes it really, really wears me out.

    Now I’m in my 60’s and MS is catching up with me. I use a walker and I look dorky. It’s why I decided to respond to this thread. I thought I could outrun MS, hang in there until lots of my peers were using canes and walkers for other reasons. Maybe still be mobile when the drug that restores myelin to my poor nerves becomes available. That isn’t going to happen, but lately I’m seeing something new in terms of public perception of disability. Soldiers and people impacted by the Boston Marathon bombing are not hiding, they’re out in public learning to live with unimaginable loss as they charge ahead with their prostheses, inspiring everyone including me.

    And all of a sudden we’re not so conspicuous anymore. Yay for that! Yay for them and their personal courage. It inspires me to keep doing battle with gravity.

  • Deb
    4 years ago

    It has been so awesome to find out that I am not the only one that has “denied” MS! I thought I was the only one. I really did. I feel SO MUCH BETTER knowing that most of us have tried to ignore and refuse our MS.

    Thank you all for that! Changed my perspective 100%. <3

  • MS1973 author
    5 years ago

    EXACTLY!
    Your post made me laugh out loud because I’ve been there! In the 70’s when we were diagnosed more than one Dr. did a spinal tap to see if I had protein in my spinal fluid. It was thought to be an indicator of MS as there was no test as you have said. When MRI became available my neurologist (I’ve been with him since 1975 or 1976.) told me that the MRI of my brain looks like the textbook image of the brain of an MS patient. Yet I’m still functioning pretty well. Since writing my first post, my sight in the right eye is much better most days. My fatigue is in check and I’m counting the days till retirement. Writing on this discussion board and reading the responses has been therapeutic. Thanks

  • toshalee
    5 years ago

    I think you should share your story more often. I recently joined this online community in hopes to find stories such as yours, to give myself some motivation.

    I am 29, and was diagnosed at 22 with very mild symptoms. Tingling in my face, slurred speech and some issues with my handwriting (not being able to grip the pen). They lasted for about a month or two then eventually just went away, which made me question my initial diagnosis. I eventually had another relapse about a year later and went to get a second opinion, which confirmed my diagnosis. Since then, I’ve had 2 other mild relapses but have been “benign” or inactive for long periods of time. The symptoms I have are mostly fatigue (sometimes severe but goes away after some steroids), some blurred vision (but not bad), random sensations in my muscles, etc… all things that don’t keep me from doing anything.

    I often wonder if it’s just inevitable that I’m going to end up with severe symptoms and it can be very disheartening. I try and be as positive as possible but sometimes that just isn’t enough! I need to read more stories like yours, so I know that there is hope and some sort of chance of having mild symptoms. I haven’t had kids yet, and that’s partly because I fear not being able to be the mom I want to be. I don’t want MS to be a burden on anyone, especially my children. It worries me. But I try not to live in fear and have every intention on having children soon. Reading stories such as yours just helps keep me in the right mindset, and keep doing the things I am doing.

    Thanks for sharing. I hope to follow in your footsteps.

  • MS1973 author
    5 years ago

    I hope you do too. When I wrote the original post I was still having blurred vision and a few other minor symptoms –left over from an exacerbation that I described in the post. I had not had much going on for a long time–just fatigue and numbness in both hands and feet. Those are thing that I have just learned to live with.

    I truly know how blessed I’ve been and as I’ve read all of the conversation in this thread that has been reinforced. I had not in years thought about how powerful a conversation this could be. Thanks

  • Hopeful
    5 years ago

    I’m glad you shared your story and from the replies I’ve seen stories like yours, and mine, aren’t nearly as unusual as I thought they were.

    I was diagnosed in 1994 after an attack that left me numb from the chest down, no feeling at all, but I could walk, type, and write. My balance wasn’t the best, but it wasn’t so bad I couldn’t walk. My first neuro looked at my MRI and said to set up my house to be wheelchair accessible because that’s where I was headed. I didn’t like his answer so my PC doc sent me to neuro #2 who also took one look at my MRI and said almost the same thing as neuro #1 which I just didn’t understand. I had only had MS for less than 1 month, I knew very little about it and other than being numb I still felt like me so I didn’t know WHY anyone would say I was going to be in a wheelchair. I asked my PC for yet another neuro referral and found the doc of my dreams. He was a caring, compassionate man who put me on Avonex right away (it had just come out of trial) and told me not to read anything, or to do any support groups for at least a year. He said that I needed to spend some time getting to know my body so that I knew what it was telling me and only after I could read myself should I start reading what others were saying about what they were feeling. He died very unexpectedly after treating me for almost 10 years and it was only then that I realized what a big deal he was in the MS field. I asked my PC how he had gotten me into to see him because he REALLY was a somebody and he said “Well, I sent him your MRI, told him you walk, you talk, you type, you write & you refuse to believe that you’ll end up in a wheelchair & he agreed to see you the next day. You see an 8mm lesion on C2 should have put you down and that’s why those first two guys told you to prepare yourself, but the 3rd guy believed that the disease is different for each and every person and you are living proof of that.”

    I have lived that belief every day since. I’ve had 3 flares since the initial attack. Bulbar optic neuritis, left me blind in my left eye, but with 9 days of oral steroids it came back and I was fine. The next one was my right foot and calf. My calf muscle tightend up and caused my foot to flex as if I was trying to walk on my heel, but a weeks worth of IV steroids fixed that problem.

    Through all of this I did the ABC drugs, well never Betaseron, I did Rebif. Then one day I just couldn’t do the shots anymore. They gave me so much anxiety I just had to stop them so I did. I was also bouncing around trying to find a neuro I liked and trusted since the man I looked at as a demi-god was gone.

    I finally found my new doc and I love her, I was doing well without drugs(she wasn’t happy I wasn’t on a drug therapy), my MRIs had been good, and I was seeing her about once a year and then life got in the way. I got super busy and stressed at work (60-70 hrs a week, new management, total change in the “feel” of the workplace, very tense now), super busy at home (I have 4 grown kids, my husband and I took on the responsibility of raising our great-niece because her mom has a drug problem, & both of my parents passed away). Basically I was living as if I didn’t have MS and it jumped up and bit me, and it bit me hard!

    The flare that I’m in now has provided me with three “hot” spots. One in the cortex, one in the right frontal lobe, and one that covers C3 & C4 on my cervical spine. I’ve lost my gag reflex, my sense of taste, my speech is a little slurred, my tongue’s a little numb, my vision’s a little blurry, balance isn’t so great, awful fatigue and cog fog 9 days of oral steroids, 5 days of IV and then 7 more of the oral to taper and I’ve seen very little improvement, but I did finally get the message that my body was sending which was SLOW DOWN!

    I don’t think my MS is catching of with me, and I don’t know that yours is catching up with you. I think we all have relapses and then periods of remission and I think you and I are some of the fortunate ones that have had longer remission periods than many.

    My user name is “Hopeful” because I am hopeful. In 1994 Avonex had just recently come out of clinical trial. What did they have before the ABC drugs? Now we have oral medications and SO many promising therapies on the horizon! I am HOPEFUL that we will have a cure in my lifetime! I’m HOPEFUL we’ll have a cure in your lifetime too!

  • MS1973 author
    5 years ago

    Wow–what a story and what a great attitude! I’m finding that the responses I’ve gotten have been extremely good for me to read. Hang in there and enjoy every day. Thanks for writing.

  • Lowdramamama
    5 years ago

    I was dx’d w/MS at 25 in 1985. And of course as you know, there was nothing you do about it! I’m surprised that you were diagnosed with MS in 1973…you must have had very classic symptoms! MRI’s were fairly new in ’85 – and it was very difficult for my neuro to conclusively diagnose MS, albeit for the few obvious brain lesions he saw!
    So that was it for MS as far as I was concerned. Never ever gave it another thought! Raised 3 sons, lived life as busy mom & wife and all that until 2010. “It” had definitely caught up w/me – and run me over! Decided to grow up & see a neuro. Dx’d right away with SPMS.
    So you are indeed blessed to be relatively symptom free all these years! Looking back at my 25 years of MS denial, I can see all kinds of symptoms I was having…but would always attribute them to something else. The best one was my “shoelaces being too tight” if my toes went numb while walking!
    I really am grateful that I didn’t “know”! I’ve been on Gilenya for 3 yrs. now w/no dz activity or progression! I am very blessed. However, I am dealing with all the collateral damage that “innumerable” lesions caused. But hey, I’m still walking (short distances) & I always have something to laugh about…ME! Stress definitely brings about CRAZY symptoms. Just give me a deadline or some type of pressure – and I’ll implode w/symptoms – mainly cognitive short-circuiting! 🙂

  • MS1973 author
    5 years ago

    Thanks for your message. My diagnosis in 1973 was done with spinal taps and physical coordination tests and the neurologists (two of them in different cities) came to the same conclusion. In the 80’s MRI’s confirmed what they said. I know how blessed I am and I thank God daily. I have had the opportunity to talk with a few people over the years when they were first diagnosed., but of course I was hesitant because most cases are not like mine. Laughing has been a great comfort to me and I try to stay positive. I hope you continue to function well and that your symptoms are stabilized.

  • Joybo
    6 years ago

    Diagnosed over 30 years ago with ‘benign’ RRMS I too had a relatively mild course, with intermittent exacerbations that seemed serious but always resolved. Blindness? SCARY but temporary. Blurred/double vision? Off and on, mostly ‘on’ these days. Vertigo! Totally invisible yet the MOST debilitating symptom that actually put me on disability 2 years ago.
    However.. let’s not assume “MS is catching up with us.” Rather, we’re all getting older and as time passes the body is generally somewhat weaker, whether or not we have a chronic disease or not. If you have symptoms that get in your way you should be off to whatever specialist can address them and keep your quality of life as good as you possibly can. I went to a meeting one morning last week and (having done my make up and hair and dressed up a bit) an associate told me how GREAT I looked and “was I cured?” I just smiled, told him HE looked great too, and please pass the salt. We understand each other MS1973 and the rest of you. Our stories are different and yet the same. I feel older and wiser than my luckier, healthier friends who take “normal” life for granted. I’m glad the English teacher “rambled” and shared and I hope you will continue to do so.
    And we are NOT strangers as far as I’m concerned. You wouldn’t tell all that stuff to a ‘stranger,’ would you?
    Now get thee to an ophthalmologist and have a great day!!

  • MS1973 author
    6 years ago

    Thanks for the response. I do feel a terrific sense of support by reading these responses, and I appreciate your comments. By the way I just went to the ophthalmologist….good news. All is well.

  • 6 years ago

    I too was diagnosed with MS in 1974 when I was 24. I had 2 children that I raised alone. The 2 men I married couldn’t handle my MS. I had my ups & downs. I get tired real easy so I do have to rest & I have to leave each day as God has given me. My story is long so I’ll cut it short. My children aren grown. I married a wonderful man with 3 sons & I now have 8 grandchildren with a new grandson due in December. I also just retired from the University in our town after 22 1/2 yrs. I wanted to stay longer but my health would allow me to. Plus I want to be with my grandchildren. Having MS for almost 38 yrs has taught me so much. I have MS, MS does not have me.

  • toshalee
    5 years ago

    Sammie, thank you for your comment. I am 29, have had MS for 7 years and fortunately a mild case of it. I haven’t had kids yet, and my biggest fear is not being able to enjoy time with them. I don’t often hear stories of people such as yourself and sometimes get extremely discouraged, even though I feel ok today. Your story inspires me and I hope to be as fortunate as you. Keeping my fingers crossed!

  • Kathy Lacour
    6 years ago

    I just want to say that I was diagnosed in the year 2000. Since then, my family does not want me to talk about my M S. I’m in secondary progressive now, but I’m doing well. Once in a will I’ll make the mistake of talking about memory problems. Right away, my sister reminds me that I’m not the only one with memory problems. Of course, I know that, but this problems are do to my M S. I know the difference. Just want somebody out there to say that they are sorry that I’m having trouble with cognitive abilities. That’s all.

  • Deb
    4 years ago

    Kathy – that’s really a shame that the family doesn’t want to hear about your MS. We HAVE to talk about it – to make sure that we’re “normal”, and to vent, and make connections. Talk to us!! We’ll listen. And laugh with you, and sympathize with you, and tell you that you’re gonna be ok. Hang in there – we’re here for you!

  • But You Look So Well
    4 years ago

    I’mso sorry your family doesn’t want to believe you have MS. I’m also sorry you’re having trouble with cognitive issues and anything else you’re keeping to yourself. You’re a good person, you are NOT nuts! and you do have MS. Drop by here any time you want somebody to talk to. Here’s a virtual hug: {{{{Kathy Lacour}}}}} We’re all nuts here, Kathy.But we’re not alone.

  • MS1973 author
    6 years ago

    Sorry to hear that your sister isn’t more supportive. Maybe belonging to an on-line community like will help fill the gap. I’ve long had cognitive issues. When I was a principal I carried a small recorder and spoke messages to myself or notes to my secretary into it. In my current job I often have to send myself emails or leave myself voice mail to jog my memory. I find that technology has been a great support to me. Hang in there.

  • Dalene
    6 years ago

    Your story is almost the same as mine. My MS was discovered when I lost all the vision in my let and 50% in my right. I was diagnosed in 1989 when I was 36 years old. I had symptoms for years but the Dr.’s I saw were never able to pinpoint what my problems were. I think a couple I saw thought I was a hypochondriac!! I feel the effects of my MS daily now, overwhelming fatigue, fatigue in my arms and legs. I am not “allowed” to take walks by myself, since I had an episode of syncopy.
    There are 4 people in our neighborhood that have MS, my aunt had it. My mom has Lupus and my brother is epileptic.I wonder about others that may have central system disorders.
    I also have another immune disorder, it is called, hypogammaglobulenemia,I receive infusions of Gamma Globulins every 3 weeks, it is also an alternative treatment for MS.
    I think all of our stories will be different, but like I said I wonder if we all have a relative with some other disorder, and if they are related to MS in some way? A question for the ages I guess.

  • betennant
    6 years ago

    Being scared, because I know I was a late diagnosis, I did a lot of research. You cannot really tell. According to one Practicing Neurologist, he saw a man with MS that he thought would live a long time and a man with it who he did not think would live long at all. The one who had seemingly much less damage, died first. I don’t think the other man had died at the time of the article.

  • MS1973 author
    6 years ago

    I have long been aware that MS seems to cluster. Supports something that I read many years ago about environmental “causes.”

  • Tricia
    6 years ago

    I was diagnosed at 50yrs and now I am 68. I was told I have brain MS. and need not worry over being crippled for there are no spinal cord signs. Through the years I too don’t have obvious symptoms.The original advice given to me was to take a year get to know my body which I did, for I was unable to work at the time. Being in the hospital and given intravenous steroids began my awareness of what was happening to my body.Every thing comes and goes and was able to become one with every new symptom as an adventure and challenge to learn by. I use a hearing aid for the ringing in my ears. It amplifies sounds around me over the ring and save me and others from the continual “What, speak louder and don’t mumble please”. When people began saying never mind, that was it for me. A hearing aid keeps me in the loop without aggravation for all concerned. I let everyone feel good about laughing with me when I slur my words like a drunk and they help me when I growp for a word my brain is unable to muster up. The numbness in my fingers and toes are funny to me cause it feels like cotton.The fatigue is like a reminder to take a break and pace myself.My stress level alone makes everything worse so I stay calm, cool and collected as much as possible.The two things which cause me most frustration is my cognitive issues and blurry vision. Have not found anything to by pass these. Only acceptance of what I can’t change.Not liken to being awakened in the middle of the night, for I know I need my sleep time, the spasms or cramps can be so painful in my feet and legs that walking is the only way to make them stop. I’m very thankful that none of my symptoms are constant except the ringing but my solution works for me.I also read all the food cures and have eliminated all processed food from my diet.I’v lost control of the sphincter muscle for my stomach and know take Previcid daily. Losing the feeling of one side of my throat gives me an appreciation of separating the liquid from solids before I swallow so I won’t choke. My bladder is next, incontinence,so here I am, 68 and still don’t know how to control my bladder, I thought I learned that many years ago.

  • But You Look So Well
    4 years ago

    That’s why there’s Poise, my dear, don’t discount it!

  • Melody
    6 years ago

    I was just diagnosed last year at the age of 53, but have been sick for the past 5 years. My MS is so mild, my Doctor thinks I could be one of those “Benign” cases. My last MRI showed no new lesions. But my Dad died Monday and my symptoms are screaming: numbness in hands and feet, clumsiness in walking, ringing in my ears, feeling my ears are full, vertigo, stomach issues, and fatigue like I’ve never known in my life. My Doctor told me that people with Benign MS usually stay very mild for 10-20 years and then they go into RRMS. I wondered as I read your story if this was the case for you. Obviously for me, the stress is making everything go nutty. But I just wanted you to know that you are not alone.

  • MS1973 author
    6 years ago

    Thanks for your response. My Neurologist (same one since early in my diagnosis) has never used the term Benign MS but that would describe what I have experienced for a long time. I’m grateful that I’ve had such a long time without major issues. I wish you well.

  • rsmith414
    6 years ago

    Everyone’s story is different. I have been diagnosed for 6 years now. I take Copaxone, but was previously on Rebif, which didn’t work for me. For me, most of my symptoms are hidden, but as the disease has progressed i have noticed that my symptoms are getting worse. i.e. i have had to up my does of baclophen to help me from shaking. In the beginning i was scared(i was only 20), but let your co-worker know that as time progresses she will become more educated on how the disease works, how no ones story is the same, and she will learn how to pay more attention to her own body and what symptoms she gets. I think that it is great that now a days there are places like this where we can talk about what is happening to us and others, and you realize that you are not alone. i personally have experienced the MS hug too and it scared the living crap out of me, I pray that you never have to go through it again. Know you are not alone, and keep writing, because you never know, your stories might just be what another person really needs to hear.

  • stillstanding
    6 years ago

    I don’t think your story is so uncommon. I have a friend that has been diagnosed for over 20 years and raised children, had a dance career and only now does her disease seem to be as you say catching up. I was diagnosed within the past few years and my course seems so different then hers and it was hard for me to understand how she lived like that when I was so miserable with the same disease. I actually felt like a wimp. I learned that if you know someone with MS, you now ONE person with MS that is it. It effects each of us differently.

  • MS1973 author
    6 years ago

    Thanks for your response. I hope all goes well for you.

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