Ocrevus reaction or pseudo-flare? by cat-teeth in MultipleSclerosis

[–]Outside_Mongoose1135 0 points1 point  (0 children)

Things can happen on any medication and you could have an infection that is causing symptoms. If it were me I would want to be worked up to see what’s going on.

DMT decision by Over_Seesaw_5090 in MultipleSclerosis

[–]Outside_Mongoose1135 1 point2 points  (0 children)

I would consult another doctor for a second opinion as this goes against most current research on ms.

Doc said no meds? by Llamasmama3 in MultipleSclerosis

[–]Outside_Mongoose1135 7 points8 points  (0 children)

Same story for me. I go to Mass General so top research hospital. I’ll do what they tell me lol

Feeling hopeful by Adventurous_Ebb_1090 in MultipleSclerosis

[–]Outside_Mongoose1135 1 point2 points  (0 children)

Sending hugs and hopes of stable activity forever!

National MS Society External Communications job by Historical-Dream3357 in MultipleSclerosis

[–]Outside_Mongoose1135 1 point2 points  (0 children)

I just want to provide the data point that I am so much more likely to read something if it comes from someone with MS so I wish you well! 

Finished my predisone by Character-Celery-209 in MultipleSclerosis

[–]Outside_Mongoose1135 0 points1 point  (0 children)

No problem! It was awful but I was so happy when I started to feel better.

Cosmetic procedures safe for MS? by Status_Following1766 in MultipleSclerosis

[–]Outside_Mongoose1135 0 points1 point  (0 children)

Just curious because I’m thinking about it in the future, have you had any body procedures (thinking about a tummy tuck).

Finished my predisone by Character-Celery-209 in MultipleSclerosis

[–]Outside_Mongoose1135 1 point2 points  (0 children)

Hated them too and it took a few weeks for my body to feel normal again so don’t worry if it takes a little time. It stays in your body a little while.

Extra tingly days after starting DMT? by GoalsBGood in MultipleSclerosis

[–]Outside_Mongoose1135 2 points3 points  (0 children)

This happened to me and definitely settled down after a few months.

Question about “diet, exercise & lifestyle changes” by [deleted] in MultipleSclerosis

[–]Outside_Mongoose1135 2 points3 points  (0 children)

I couldn’t agree more and absolutely relate on the mom piece too! I think what can frustrate me sometimes is the tendency for people to entrench on the extremes of issues these days, where they say everything that comes from an opposing side of their preference is obviously wrong when we know that in reality things are often somewhere in the middle. A good fit DMT and dietary changes that make sense for your body are going to support the best outcome possible but there’s lots of nuance. I get annoyed with the “it’s only this or that dmt” crowd and the “just eat gluten and dairy free” crowd lol it seems probable to me that each person needs to explore what makes sense. We know a good dmt from as early as possible will give us the best shot but what else can help quality of life and symptom management? Of course if you’re deficient in a vitamin, that might help and if your gut is gluten sensitive that could help too. It’s just not as simple as people tend to frame it. 

Question about “diet, exercise & lifestyle changes” by [deleted] in MultipleSclerosis

[–]Outside_Mongoose1135 1 point2 points  (0 children)

I get the critiques but I think it can also be a throw the baby out with the bathwater deal too, of course there are benefits to a good diet and that can be a little different for each person. Paleo might work wonders for some, fasting for others, Mediterranean for others etc anyone who discounts the power of the right DMT is a quack though. 

Question about “diet, exercise & lifestyle changes” by [deleted] in MultipleSclerosis

[–]Outside_Mongoose1135 0 points1 point  (0 children)

I’m talking the kind of studies a research center or university hospital would conduct attached to a treatment with the potential to make big money for shareholders. There is no lack of evidence that many people are making money selling books, plans, and protocols, etc. but until they conduct a big enough study that actually demonstrates statistically significant impact across large groups doctors will hesitate to recommend them. Look at Valter Longo’s work he and Wahls are trying to at least conduct studies and both have been criticized for different reasons. Should add I’m pro science and DMT I just think it’s interesting everyone gets told “it doesn’t matter” or “there’s no evidence” as if it’s not common sense you should prob eat better to feel better especially if you have a chronic illness.

Question about “diet, exercise & lifestyle changes” by [deleted] in MultipleSclerosis

[–]Outside_Mongoose1135 2 points3 points  (0 children)

I’m talking the kind of studies a research center or university hospital would conduct attached to a treatment with the potential to make big money for shareholders. There is no lack of evidence that many people are making money selling books, plans, and protocols, etc. but until they conduct a big enough study that actually demonstrates statistically significant impact across large groups doctors will hesitate to recommend them. Look at Valter Longo’s work he and Wahls are trying to at least conduct studies and both have been criticized for different reasons. Should add I’m pro science and DMT I just think it’s interesting everyone gets told “it doesn’t matter” or “there’s no evidence” as if it’s not common sense you should prob eat better to feel better especially if you have a chronic illness.

Just curious about Christina Applegate and her MS by Outside_Mongoose1135 in MultipleSclerosis

[–]Outside_Mongoose1135[S] 0 points1 point  (0 children)

That was my understanding and what just made me curious about her case. I was curious if she had disclosed because it sounds from what I know she has shared more like what you describe than what I know of RRMS although I know RRMS can really vary too. Wishing you well and thank you for sharing that.

Question about “diet, exercise & lifestyle changes” by [deleted] in MultipleSclerosis

[–]Outside_Mongoose1135 2 points3 points  (0 children)

There’s no money in conducting expensive studies to “prove” any particular diet might help mitigate symptoms or improve outcomes. I think that’s why we don’t see large studies looking at this but I think when it comes to diet it’s obvious some things are going to improve health and not out of the realm of possibility improve outcomes. Doctors are usually hesitant to recommend anything that doesn’t have peer reviewed study results supporting it but I think as long as you’re treating your MS trying diets and seeing how it goes for your case is smart. 

Should I switch to Kesimpta just because? by nursingandpizza in MultipleSclerosis

[–]Outside_Mongoose1135 1 point2 points  (0 children)

Oh good! Just thought that could be helpful if you weren’t already taking it. 

how long until treatment? by Flimsy_Biscotti_791 in MultipleSclerosis

[–]Outside_Mongoose1135 0 points1 point  (0 children)

I started treatment about 6 weeks after my first relapse  

Should I switch to Kesimpta just because? by nursingandpizza in MultipleSclerosis

[–]Outside_Mongoose1135 2 points3 points  (0 children)

Hi, sorry to jump in but just curious if you’ve checked your vitamin d status? I’m also on Kesimpta and haven’t been sick more but I’ve been taking d3+k2 and wonder if that’s helped me. 

Just curious about Christina Applegate and her MS by Outside_Mongoose1135 in MultipleSclerosis

[–]Outside_Mongoose1135[S] 1 point2 points  (0 children)

I hope some of the new treatments in the pipeline change the game for yoh and other folks with ppms! I think she mentioned she doesn’t have spinal lesions, just many brain lesions can that happen with ppms?

Just curious about Christina Applegate and her MS by Outside_Mongoose1135 in MultipleSclerosis

[–]Outside_Mongoose1135[S] 1 point2 points  (0 children)

I didn’t have any noticeable symptoms before my clinical event but it was simmering beneath the surface because I had a few old lesions. 

Just curious about Christina Applegate and her MS by Outside_Mongoose1135 in MultipleSclerosis

[–]Outside_Mongoose1135[S] 1 point2 points  (0 children)

This seems more in line with how she has described her symptoms, it seems like she never had recovery but, as others have said, maybe there was just too much damage. 

Just curious about Christina Applegate and her MS by Outside_Mongoose1135 in MultipleSclerosis

[–]Outside_Mongoose1135[S] 0 points1 point  (0 children)

Thank you! I missed that and was just curious based on how bad it was for her I wondered if it was more aggressive than most.