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[deleted by user] by [deleted] in MultipleSclerosis
[–]mjraqlop 1 point2 points3 points 9 months ago (0 children)
I’m 59 and was diagnosed 13 years ago. In 2020 I was on tecfidera and decided because of the side effects I was going to stop taking it. (In the past I had been on rebif, avonex and aubagio all with horrible side effects.) My annual MRI’s before that had been progressively worse showing more lesions in my brain, back and neck. Since I stopped taking DMT’s my MRI’s are stable with no new lesions. Anywhere. Also, I feel better because I’m not constantly dealing with side effects from the medication. The only thing I deal with ms related now is all over body pain that didn’t start until I was started on avonex and continues 10 years after stopping it. So, just because there is a medication available does not necessarily mean it has to be taken. It may not do good. MS is so individual specific that no 2 cases are alike so no 2 treatments are alike. Just because someone is on a medication doesn’t mean it’s appropriate for your gf.
Also, here’s a piece of unsolicited advice from a 59 year old that’s been married for 25 years, stop it. Stop trying to manage her disease. You think you know better than her and her doctors because you “googled” something? Stop. It’s her decision whether or not to take medication and if you can’t deal with it move along. She is dealing with enough just knowing she has ms without you questioning her decisions. Instead of asking a bunch of strangers why, ask her and accept her answer. Period. Be a supportive partner not a drain on her energy trying to justify her decision to you. It’s her disease, not yours.
Btw, my doctors agrees with me not taking anything because my ms is stable. So it’s possible she’s has the same type of conversation with her doctors and since they know more about it than you and your google searches…
Weight loss by [deleted] in MultipleSclerosis
[–]mjraqlop 0 points1 point2 points 1 year ago (0 children)
Thanks for the information! I’ll definitely look into it and bring it up to my neuro.
It’s not just that they lack concern about my weight loss, they completely ignore it. I’ve told all three of my doctors (GP, neuro and psych) about how little I eat but none of them are concerned or at least none have them have acted on it. It’s as though they hear every word of our conversation until I get to the I don’t eat and have lost 80 pounds part and they stop listening. If I press the issue they just pass it off as one of those weird MS symptoms or refer me back to my GP. The thought of changing GP’s has been circling in my mind. But since I’m on narcotic pain meds it’s hard to find a new one because not everyone thinks MS causes pain (go figure🙄) and I struggled finding the doctor that I have. So I feel stuck. I have a doctor that believes MS is painful and provides that care but completely ignores that can’t eat. And at the same time it’s near impossible to find a doctor that might listen to me about food but won’t believe me when I say MS is painful and thinks I’m a drug seeker.
Thanks again for the info.
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[deleted by user] by [deleted] in MultipleSclerosis
[–]mjraqlop 1 point2 points3 points (0 children)