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Close Friend Passed Away In August

Firstly I wish to say hello to all here. Secondly I do not have MS myself but I lost someone very near and dear to me back in August. She died suddenly in her sleep at her home. Myself and our other coworkers waited several months for the results as to why finally came in. The primary cause was listed as Multiple Sclerosis. We were shocked to say the least chiefly because we did not know our friend had MS in the first place. She apparently knew she had MS but did not tell any of us. We know she knew she had it because somehow the coroner found out that our friend had made an appointment at Mayfield Clinic some months prior but had cancelled it. Looking back we can see many of the tell-tale signs of MS. She was often extremely tired. She had totally lost sight in one eye(her left eye), over the last 2 years it was noticeable how she had problems with balance and her gait had changed as well. She also would occasionally slur her speech which sadly some coworkers put off to her supposedly being 'drunk' which was not true at all. She also had occasional times of loss of bladder control and we would notice a wet spot on her pants at work. She had spontaneous unexplainable bouts of severe lower back pain. She also had gone to a dentist for severe pain on side of her head and jaw and thought she had a bad toothache only for the dentist to end up telling her it wasn't her tooth and he could not figure out what it was so she was left to take ibuprofen. I don't know if this is a potential sign of MS but even though she was a thin built woman she would often get a lot of swelling in her feet and lower legs. Only a few weeks before she died she came to work in the morning and was sitting at the breakroom table and I came in and noticed she was sweating profusely on her face and head and had a bit of a tremor/shaking going on and I asked her if she was okay and she of course said she did not feel good so I called her husband to come and take her home. There were likely other things I have not related to MS but that is enough. She died in her sleep this past August(2020) and needless to say we were all devestated. I would go so far as to say heartbroken. She was loved. My point in all this is that I too have read nearly everywhere I have checked that MS is rarely if ever fatal. I even spoke to a Neurologist who told me that he was rather shocked that MS would have been listed as a primary cause on her death certificate. I am no doctor so I didn't know what to make of his statement. All I know is that Deanna died suddenly and the primary cause was listed as MS. It was a very sad thing for everyone involved but what is also sad in my mind is that so long as the coroner did not somehow make a mistake in her diagnosis of death, then people who suffer with MS are being given short shrift IMO. I have read briefly about something if I am not mistaken is called "Marburg MS" which from what I read sounded pretty aggressive. I hope I'm not seen as an interloper posting this but I suppose I am just trying to find something out about this since a very close friend passed away as well as just to share. Thank you.

  1. First, I'm so sorry for your loss. It sounds like you were close.

    Honestly, the folks who die these days (and you're right it is rare now to die from MS thanks to the many amazing disease modifying therapies we take) most of the time the cause is listed as "complications related to MS" and not from MS itself. People with MS take disease modifying therapies (DMTs) that alter the immune system to slow the disease down, and the risks of those meds often increase with their efficacy (this includes cancer, cardiovascular issues, lung issues, deadly brain infections called PML, stroke, other infections, and many other things). While it is possible for someone to die from MS (like having a relapse that hits the brainstem which can cause problems with heart/breathing and major organs) it is still relatively uncommon and if it happens it usually happens in the more aggressive forms of MS. There's a greater chance that your friend died from an MS-related complication (and maybe it was put down as MS) than from MS itself (though yes, it could be from MS itself in rare cases). I have MS (PRMS), and my grandfather had PPMS and died from MS-related complications (his body became too frail from continued immobility and was unable to fight infection), though the family still tells people he died from MS--meanwhile I know that it is not actually accurate to say that in light of it. If someone had PPMS or agressive/progressive relapsing remitting (PRMS) and didn’t get adequate treatment, that can raise the odds of dying perhaps... since brain stem lesions are a strong prognostic indicator of a more severe clinical course of MS. In those folks it is recommended to have early and highly efficacious treatment sometimes initially reserved for those with more severe courses, or those that have failed at least two or more front-line DMTs.

    If your friend was relatively well, it is possible she succumbed to a complication from one of her disease modifying therapies or a severe infection from having her immune system chronically suppressed by DMTs. When it comes to MS, a lot of folks guard their privacy carefully since it can affect their jobs, and many don't love the idea of being treated differently (that's understandable).

    I'm sure that probably doesn't help, since nothing really can in situations like these. But I thought that maybe some added context might be helpful. It sounds like things were sudden and unexpected which makes it all that much harder. Again, I'm so sorry for you loss. It sounds like she was a wonderful person.

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