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Here We Go Again

Here We Go Again

I don’t know if it’s just me, but whenever I have an MRI and learn that I’m progressing and/or when I go into a flare, it feels like I’m dealing with being diagnosed all over again.

So let me explain more… You know when you’re diagnosed you have your “steps” of dealing with the diagnosis, confusion, anger, depression, denial, etc. Well – that’s how I feel when I am in a flare or if I’ve learned that I’m progressing, even though I’m doing everything I can to “slow” the progression.

So, I recently had an MRI & the report states that I have “at least” 7 new lesions… Now, I haven’t really had a “noticeable” flare, but they aren’t always that noticeable either. Anyway, when I learned this… I was angry. I wasn’t angry that the meds aren’t slowing the disease, because they aren’t said to STOP progression, just to TRY and SLOW it. I was just angry with my body, I still am in a way.

I tried explaining it to family about how I was feeling. It’s kind of like when you’re betrayed by someone you trust to never betray you… it’s like a slap in the face. Well, that’s how I feel… but I can’t be mad at “anyone” because it’s my own body that’s doing it to me. So yeah, I’m angry that I keep progressing… I’m angry that I’m trying to do everything in my power to fight my MS… and at times, it feels like it’s not working.

But the thing is, when people tell me to “calm down” and that “it’s going to be okay”…. that just makes me even more upset. I finally just said, let me be angry… let me be upset… just let me GET IT OUT. It’s not like we can predict the future… and MS is FAR from predictable. But I just wish it was understood that we have a right to be angry… it’s OKAY to be angry. It doesn’t mean we are always going to be angry/upset or depressed… we just need to let it out, not sit here and bottle it all in. That’s just making a ticking time-bomb, in my opinion.

So anyway, I just feel like whenever we have a relapse… or our MRI shows progression, it feels (in a way) like being diagnosed all over again. Because, sometimes, we have to make decisions all over again, like we might need to change meds for one… things like that.

For those that go in to a LONG remission, that’s great! I’m very happy for those people, but I’m not one of those people as of right now. MS isn’t an easy illness to live with, especially when it’s not even known what causes it and/or how to stop it.

I’m a stubborn person… I’m a fighter… & I’m told how strong I am… but that doesn’t mean that I never show weakness. It’s okay to show weakness, just because you show it, doesn’t mean your a weak person… it just means that you’re a HUMAN BEING!

xoxo

Ashley Ringstaff

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Comments

  • Carrieb
    6 years ago

    I’m with you as far as letting it out, having those days of anger, frustration, depression. That’s when I call a friend who also has MS. We became friends because of MS, and lean on each other even though we do not live near each other. In fact I’m calling her now. (4 days in hospital for paralysis on left side – SCARY)

  • Gail M
    6 years ago

    Ashley, you wrote my feelings out exactly. I get so frustrated and angry. I was diagnosed 4 months after I married my best friend, that was in 2008. I have been on Tysabri for about 7 months now and I keep developing more symptoms and of course more lesions. I love my neurologist however he says my Tysabri is not for now but for later.(which I don’t understand). I was disabled shortly after my diagnosis, I was a Hairdresser and absolutely loved it and I miss doing it. I just couldn’t stand any longer and the fatigue wiped me out. I wanted to ask a question though I have started to lose my hair. Underneath it is completely gone. I was wondering if anyone else is struggling with this and what is causing it? Someone please HELP!!!!!

  • sharon
    6 years ago

    Ashley, I agree with you totally. On my hour long drive home from work I was thinking much the same thing. I know I am Strong, I push through every day at work. Through the over whelming fatigue, trying to hold my bladder and struggling with each step. I live alone because my husband passed away four years ago, so now I rely on others. Which isn’t available when I just need to change a light bulb on the ceiling fixture, etc.. I don’t need rah rah happy happy talk. I’ve decided most people will never understand. I too, am tired of trying to explain. One can’t.I just keep on pushing along and keep my anger and sadness to myself.

  • Stacy
    6 years ago

    First of all Ashley, thank you for putting feelings into words! Have had MS since 1985, spent the next 25 yrs in DENIAL until things became so obvious – that I finally grew up & sought help at the MS clinic at UTSouthwestern in Dallas. Dx’d immediately w/SPMS & started my first dz modifying drug, Gilenya. It was truly like being diagnosed with MS for the FIRST TIME! Except this time – I could barely walk, think, make a decision, etc… My brain was “on fire” w/active disease and the MRI showed a thumb sized black hole! So much for my “klutziness” & “senior moments”, right???
    I felt STUPID for being so completely uneducated about MS, much less SPMS. I am an avid reader and researcher, so that just tells you how deep (and dumb!) my denial was.
    I am so blessed to report that I just got got my annual MRI results – and there has been no dz progression or activity for the last 3 yrs. I’m just dealing with all the collateral damage that has ravaged my brain with its “innumerable” lesions.
    But my FEELING was that of BETRAYAL! I knew for years my MS was in complete remission or had miraculously healed! In fact – looking back, I had many MS symptoms, and just attributed whatever was going on to depression, or being lazy, or needing stronger reading glasses – and the best one was…my toes would go numb because my shoelaces were too tight!!! Ridiculousness!
    And now I know that with SPMS – the symptoms are more likely to be a slow degenerative & much less obvious progression – even though it’s progressing. If and when I ever find out it IS progressing – I know I will be angry, disappointed, fearful and hopefully resilient! I so admire your attitude and others’ – who get OUT and LIVE!

  • eva
    6 years ago

    My MRI has too many spots to count and is interpreted to mean I require 24 hour care! I am 69, symptom free, and fully mobile. Many journal articles are questioning use of MRI for predictions. Eva Marsh

  • Neva
    6 years ago

    Ashley, I have PPMS and every time a new MS symptom rears its ugly head, I go through the five stages of grief: Denial, Anger, Bargaining, Depression, and finally Acceptance. You would think that after dealing with this for 15 years, I would just skip the first four and go to acceptance every time there is a progression, but I don’t.:(

    It is important that you surround yourself with people who love you and accept you no matter what. You need to be able to feel all the feelings you go through without feeling guilty for doing so. Everyone reacts differently to different things and in their own time, and it is important to have people around you that understand this. Namaste.

  • pamiejune
    6 years ago

    Wow Ashley, you worded everything the way I also feel, just couldn’t find the words to describe it to others or myself..thank you! I do feel that with every flare up I have I am dealing with all my emotional steps all over again.

    I’m in secondary progressive m.s., but all in all if you have m.s. forget the labels! “Normal” for me is being off balance daily and using my cane or walker when outside, inside I hold onto walls and counters as I make my way around the house. When I had a flare up of my symptoms in the past I wasn’t able to walk well at all,slurred speech, confusion, falling,etc. Now that I have progressed thru the years, when I have a flare I also now have the other increased symptom problems, but for the past couple years have complete body spasms and severe tremors.

    I get SO angry when this happens, and its happening more often now, because one it hurts physical and two I know I’m progressing more and have no control over it at all. The anger lasts for days, then as the flare up finally subsides thanks to i.v. solu-medrol, I get depressed and hate my body for betraying me and keeping me from living life the way I want to.

    Anyway, thanks again for giving me the words I needed :)All we can do is try our best to hang in day by day…that’s what I tell myself.

  • Marybeth
    6 years ago

    Thank you for writing this. You expressed exactly how I feel about this disease. I was doing well for 26 years
    post diagnosis and for the past three years MS has progressed to the point of being disabling. I have not given up, just getting a bit tired of fighting back.
    I am angry, frustrated and just plain tired of this.
    I try to reinforce within myself that it could be so much
    more difficult, but I have lost that perspective.

    Not all is lost though, there is still a spark that reignites every so often and gets me going. I just got hand controls for my car and had a great instructor and between the two of us even managed to pass my driving test
    for a new license for adapted driving. Now I am researching volunteering in a hospital.

    Most of all, I am looking forward to rekindling relationships with family and friends that I have alienated over the past two years while I wallowed in self pity.

    As I write this I realize once again that I am not as bad off as I think I am.

    Like you, people over the years have lauded my strength
    and I was independent to a fault. Yes, we are strong
    yet that strength exemplifies the sheer will that we have to keep going while inside we have anger, frustration
    and most of all fear for what the future may hold.

    I will just keep on the Copaxone, get some PT and
    and look forward.

    Take care and know that you have helped me today and I thank you.

  • dndallen7
    6 years ago

    I can understand your frustration. I always get upset if I have a relapse. It is like “WHY”!!?? I wanted to share with you something I have been doing and it has helped tremendously. I have had MS for over ten years and have had my ups and downs. I am on a new medication, tecfidera, (yay no shots!). But I also started a new diet and health regimen. I was introduced to Essante Organics. I have been on the vitamins and supplements for two months now and I feel better then I have ever felt in the last ten years. I have energy, my depression has lessoned and I just feel good. Essante’s products are 100% organic, toxic and chemical free. They are certified organic to. All food grade. They do not have one product be it toothpaste, laundry soap, body wash, that you can’t drink (if you choose) that would make you sick. They are the safest products out there. The supplements that I take, are called reds and greens, they both equal to 5.5 pounds of fruit and vegetables per serving. I am also taking Omega 3, 6, 9. As an MS patient we need our Omega’s to help with the demyelation. They are so good for brain function. I am also taking Vitamin D3. It is 10,000 Iu of vitamin D. That is more then what I was prescribed by a doctor! My D level has gone up and is still on the rise. I am just a (little) bit deficient. I just seen my neuro and he was amazed at how well I am doing. I was even able to walk a straight line, heal to toe, without being wobbly. I have never been able to do that since I have had the disease. I just can’t tell you enough as to how I feel since being on a more healthy, organic, and alkaline diet. I also have a friend through Essante that was told he would never walk again without the aid of a cane or walker. Guess what, he changed his diet, started the proper supplements and he walks perfectly fine. His doctor was amazed. If you would like to check out the products the Essante has to offer, check out my website at http://www.essanteorganics.com/danellallen I promise you that you will be amazed at how well you will feel just in changing your diet, eating organic and being less acidic.

  • Kip1769
    6 years ago

    Totally understand and I’m sorry you got this news of progression!
    : (

    http://Www.overcomingmultiplesclerosis.org

    Very helpful to us, have made wonderful contacts through the forums and community and the lifestyle has made a huge.difference. recent MRIs show.no.changes! 🙂 of all the.books I reaI wish I had read this one FIRST! Overcoming multiple sclerosis by Dr. George Jelinek. A physician who lost his mother to MS and then.later in his 40’s was diagnosed himself. He uses all his resources in the medical community to learn and research and share his knowledge with those impacted by MS. He has developed lifestyle change suggestions to follow that have seemingly worked for so many. We decided if it doesn’t “cure” Ms, which we know nothing can,it can’t hurt to be our healthiest facing it. So far living it there have been no relapses or progression, so very happy! A plus.. dropped some extra pounds and feel great! Get the book and check out the companion website! I’ve learned SO MUCH! :). Take care sweetie!

  • burghgrl
    6 years ago

    Hi…gosh, every time I read “there’s nothing that can be DONE, to SLOW it down” I want to SCREAM. Yes. There IS. Thank you…for mentioning George Jelinek. You see, HIS work, is based on the original founder, Dr. Roy Swank’s lifetime devotion to stopping the progress of this disease. Ohhhh, sooo much I could say on this. I was fortunate enough to have been a patient of Dr. Swank’s for ten years. When dx’ed in 1989, I was told I had “in the top third of the worst cases they’d EVER seen” and..”had a few good years left”. Really?? Ohhh my…Dr.Swank, said differently. (I’m really cutting to the chase here)…HE said “if you do as I say Donna, you can lead a NORMAL life”. I’ve been on diet (yes…diet, and there’s a REAL and proven cause for this particular diet) for 24 years, NO DRUGS, and have had ONE exacerbation in all that time. Please…do yourselves a favor…you can skip Dr. Jelinek’s book, or read it if you must, but the ORIGINAL work, was done by Dr. Roy L. Swank. His book, is called the multiple sclerosis diet book, published by doubleday. There’a a website http://www.swankmsdiet.org and even a not widely known of facebook page. For that, just enter Swank ms diet. He saved my life. DIET, REST, STRESS reduction…all of it combine to make for a no meds whatsoever lifestyle.

  • Kip1769
    6 years ago

    Side note.. currently not on meds. trying not to have to use them. As long as there is no progression. When and if there is we will revisit the meds and choose one. The lifestyle is suggestions and by no means does dr. George say not to take meds. If the plan doesn’t work he tries to help you decide which may be best for individuals to choose by breaking down each medication and.how it works and what studies have shown on the success rates. He has been relapse free over 10 years and many others as well share their success on the site. 🙂

  • Cathy Chester moderator
    6 years ago

    Ashley we are here for you, if only to listen and sympathize with what you are going through. We all know that MS has certainly dealt us a tough hand. and we need to voice our anger and frustrations. I am glad you wrote this post and I hope it helped in some way to write it.

    I hope your medication helps you to feel better. I am thinking of you.

    Cathy

  • Laura Kolaczkowski
    6 years ago

    So sorry to hear these latest results. Anger is just one of many emotions you have earned the right to express. Here’s hoping your new DMD kicks in soon and makes the difference.

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