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Do you ever feel like you were lied to?

  • By Marcie Kim

    When I look back on our journey with MS, I can’t help but cringe at some of the major life decisions we made based on really bad guidance from the medical community. We had NO CLUE what we were in for, despite conducting extensive research, meeting with neurologists, GPs and even a genetics counselor. Surely they weren’t lying to us? But I look back at the pollyanna nonsense they told us – and I scratch my head. I used to naively imagine my husband in a wheelchair – decades in our future, of course – and I’d think how sad that would be if he was among the 1 in 4 (as we were told) people with MS who someday need a wheelchair. The medical community talked about mobility almost exclusively – everything was about walking and not walking and balance! Oh, the discussions we had about balance. We quickly glossed over references to incontinence and pain. No one mentioned cognitive decline in any of the research we did online, the books we read, or in the meetings with medical specialists. Most still minimize the incidence of dementia, casually cautioning about a possible ‘lack of focus’. Oh, I almost forgot my favorite: You cannot die from MS! We heard that a lot. I’ve imagined in recent years the number of people attending a funeral who would be amazed to know their loved one didn’t die from MS. <note sarcasm> Like so many in these forums, we thought our worst case scenario would be the loss of mobility, and we soon discovered that wasn’t even in our top 5 concerns.

    My husband has had MS for 25 years, but it became progressive in 2010 at age 40. In these last 7 years, he has declined from a busy career as an aerospace engineer, an active volunteer and involved father of young children to being confined to a power chair with use of one hand, one shoulder and his face. Otherwise, he’s a quadriplegic. And he has dementia. He’s been through all the DMTs and – to state the obvious – none of them ever worked. He comes from a huge extended family with zero cases of MS, which is only moderately reassuring to me when I read all the forum comments from people who are 2nd, 3rd or 4th generation MS patients in their families.

    As a mom, the hardest part for me is that we brought two little children into a quagmire of a life, thinking “a parent in a wheelchair isn’t a big deal, if that happens”. Guess what? I still feel that way. Who cares about a wheelchair? I mean, it’s horrible. I don’t want to minimize the impact of having to use a wheelchair. But you can be an amazing parent and use a wheelchair. You can be an engineer. You can cheer at your kids’ ballgames. You can travel. You can engage with your family and friends. You can do everything everyone else does – except walk. So we had children and my husband continued his DMTs and everything was peachy until the kids turned 5 and 2 and then suddenly everything was not OK. And that genetics counselor who had assured us that our future children were no more likely to get MS than anyone else? Well, I wasn’t so sure I believed her anymore. I had to look at two sweet little faces and wonder if their own mother had set them up because she had been naive.

    There’s better information available now – thanks to bloggers. The MS community finally acknowledged that yes, of course, you can die from MS; and yes, sadly, the brain damage can result in dementia. And that neither of these things is unusual. But I rarely see those acknowledgements from the medical or research communities – or even from the MS advocacies – I get most of that from people with MS.

    I don’t ACTUALLY think anybody lied to us. But I do think they were negligent in downplaying the myriad of complications this disease can bring. I hate that I trusted the experts – and I wholly own my own optimism. My husband is kind of a worst-case-scenario and maybe it didn’t make sense to scare a young couple with a list of unlikely possibilities.

    What about you guys? For those of you who have been at this for a long time now, do you feel like we have better information now? Did you get good information in the early years?

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  • By Erin Rush Moderator

    Hi Kim and thank you so much for your post! I am sure you are busy enough, but speaking of blogging, I think you would be excellent at it! You touched on a lot of tough issues that caregivers face and I agree that grassroots sharing and educating has brought many of these things to light in a new way.

    A lot of what you shared reminded me of our contributor, Donna (https://multiplesclerosis.net/community/experts/donna-steigleder/). She is the primary caregiver for her husband and writes extensively about her experience. She is also a blogger.

    I am so sorry your family is dealing with the less discussed issues associated with MS, like incontinence and dementia. I think blogging and support communities like this one offer a measure of hope and comfort to people as they realize these embarrassing things they are dealing with are not rare. It helps to know you are not alone.

    I will be curious to see what other members say about the quality of information they received years ago. Cathy, another contributor/blogger (https://multiplesclerosis.net/community/experts/cathy-chester/) has been living with MS since the 80’s and I bet she would have some good perspective on this topic. I know any of our members are surprised by the MS related symptoms their doctors didn’t tell them about (sound sensitivity, forgetfulness, extreme sensitivity to temperature/weather, swallowing issues, digestive issues, etc). I am not sure why this is the case. Maybe doctors don’t want to overwhelm the newly diagnosed with too much hard information?

    Please know you are not alone here. Thank you for sharing. Best, Erin, MultipleSclerosis.net Team Member.

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    • By Marcie Kim

      Thanks, Erin! I think the point neurologists should be making with patients is this: lesions = brain damage. The more lesions you get, the more brain damage you incur. Since your brain and spinal cord control all of your bodily functions, you can lose any of them – the things we see on the outside (like walking) as well as things that we can’t see that are happening on the inside.

      I’m glad they didn’t scare us back then, but we needed to know the truth so we could plan for what was coming. I really appreciate forums like this for allowing for much more open conversation than we had access to. Thank you for advocating!

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  • By Ashley Ringstaff Moderator

    Kim,

    I’m so sorry to hear everything that you are your family have been through. I was diagnosed in 2010, at the age of 22. I can tell you from first hand experience, that I wasn’t told everything. I wouldn’t say ‘lied’ to, because I really don’t think the neurologist I first saw, had complete knowledge of Multiple Sclerosis.

    From what I’ve heard, and from experience, once I started seeing a specialist, I was more informed. Of course, reading first hard what people have gone through from patients living with the disease, has been extremely helpful. I think that over the years, we have made great strides in the MS research area, but we still have so much more to do and find out.

    My first neurologist told me that I would be in a wheelchair within a year, and I wouldn’t recover. I was in a wheelchair for a period of time, but I was able to rehabilitate and not depend on the wheelchair 24/7.

    Just recently, the FDA approved a medication for Relapsing-Remitting MS & Progressive MS, called Ocrevus. I didn’t know if you had heard about it or not.
    https://www.ocrevus.com

    I’ve learned not to rely on people to inform me, but to try and get the information on my own. I’ve signed up for “Google Alerts” for Multiple Sclerosis, etc.

    I hope my insight has helped some, but I know that many others can give their perspective also.

    xoxo

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    • By Marcie Kim

      Ashley,
      Thank you for your reply! As soon as I posted that to the forum, I regretted it and wanted to delete it, but I couldn’t find a delete button. I don’t want to discourage people like you who are just beginning this journey. I feel truly optimistic that neither you nor any other young people facing this disease today will go through anything like what we have. The treatments are better. Information is more readily available. More research is in play.

      I have become a pro researcher over the years. When my husband was diagnosed in the 90s, we were not given accurate information – the risks were marginalized. Information online was limited and the advocacy organizations were trying really [too] hard to put a positive spin on a really tough disease. Plus, his neurologist – like most neurologists – had very little experience with MS. So getting the truth was tricky. Everything improved when we started seeing a neurologist who specializes in MS, but unfortunately, my husband’s disease progression has been a worst-case-scenario. He nearly died three times from MS treatments! You know the asterix that says a small percentage of people had a really adverse reaction? He’s the guy.

      Yes, we looked into Ocrevus, but it only works on active MS (RRMS/PRMS/PPMS) not inactive (SPMS) which is what my husband has. Research into remylination will yield better treatments and outcomes for future patients. And Lemtrada has a really impressive track record with young, newly diagnosed patients. It’s a shame the FDA has restricted it’s use so much in the US. My husband was too advanced by the time Lemtrada passed FDA approval, so unfortunately, it didn’t help him the way it’s helping others.

      I wish you all the very best, Ashley! Thanks for advocating!

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  • By Anonymouse

    Hi, Kim,

    I’m so sorry about the havoc this disease has wreaked in your family’s life.

    I felt that my MS diagnosis downplayed the disease. As with your experience, the conversation focused on mobility. Nothing at all was said about possible dementia, atypical brain shrinkage, reduced life expectancy, or other unhappy topics.

    Thank you for speaking out in your valuable and heartfelt post.

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  • By Nutshell

    Hi Kim,
    First I pardon my English I’m from Saudi Arabia and my English isn’t quiet well.
    I’m not sure if what I’m gonna right is related to the title currectly as I mentioned my English isnt great.
    I was diagnosed in 2005 age 17 but its been hidden from me 5 years fair enough I didnt feel it anyway. When I knew about it I insisted on meeting doctor getting treatment I got interferon 1 or 2 years then got my second symptom virtego. After i recovered from it i went to New york NYU hospital prof Joseph Herbert. He saw me and told me im ok after seeing my mri scan he said I’d most probably be ed bound in 2011 if i didnt fake tysapri.
    Im educated and skiptical.
    I just cried and stopped all treatments till today. I finished uni in 2011
    Went to uk 2012 studied and worked.
    Now im back and i have a job.
    Perfectly fine not disabled in edimburgh drs were asking me to tale tecfidera anything i know for sure id get hard symptoms if i do Nd i know for sure if i complain they’d say to protect me in the future when I’m 40 well im 29 nohhing happened to me.
    They just discoverd that immune symptom is in the brain part of it i mean and they still saying they do know
    No one can understand the complex of the mind surgical maybe other things no all brains drugs are nothing but putting our diseases in the marker with universal prices they r free in saudi but the fact that they r actualy pricy makes ne believe that more and every couple of year they creat new drug serve same reason make disease last forever with no cure just like tv new shows its sick to me really im sorry if ur subjext is And sorry for rumbling much its over my chest for years.

    Thanks for the post again
    Be safe

    Reem

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    • By Marcie Kim

      Reem,
      Thank you for your comments. Your English is good – I understood you. I am happy for you that you are doing so well That’s great news!

      I don’t think the pharmaceutical companies or doctors want to perpetuate the disease – most people on this earth have good intentions and want to do work they can be proud of. That said, I do understand your frustration and skepticism. The DMTs work very well for some patients – but they do not work for others. Someday, we will understand why that happens. I hope you will find an MS specialist you trust.

      Wishing you all the best, Reem!

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  • By Nutshell

    Hi again Kim,
    Yes I agree most people on earth are good I went to many countries all same.
    But what I meant companies sometime im not accusing anyone but greed accures.

    My dr in Edinburgh dr Willer she was like a mum to me and my dr here dr Reem hehe we share same name shes great too. I just feel anxious of meds.

    But who knows 🙂 maybe later I accept and remember your lovely words.

    Kind regards
    Reem

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  • By melack01

    I don’t feel that I was lied to, it’s just been left up to me to find the information. Like you at first I was only aware of the mobility issues. Those I was ok with, no plans to make, I’m almost 58 and was just diagnosed this year. I didn’t know about the cognitive issues until I started having them. Right now, this week, they are not too bad. But there are times I don’t know who I am anymore. I have trouble reading, I have outbursts (in gibberish, not English) and I feel my basic personality is degrading. My neurologist feels I’m doing fine because I only have minor mobility issues. He is not an MS specialist, but since I get my healthcare through the VA, I can’t look for another. He was great through the diagnosis process, I’m just hoping he will learn more about MS

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