Multiple Sclerosis

[Cocximus]

In 2016 I woke up with a blurry eye. Two days later it was completely dark. MRIs determined I have MS lesions. It slowly came back, to about 80%. It's never been an issue and overall I think it brought an overall positive change in my life. It kept me motivated to stay fit and healthy.

A week ago, in the morning I was about to start my move to to the west coast, I woke up with severe vertigo, complete loss of balance and fine motor control. Turns out I now have remitting MS, and my cerebellum was hit hard. I feel like I am drunk on a small boat in a storm. I had excellent mtb and skiing skills. Now I am shitting bricks. Will I only get a percentage back?

I want to avoid playing battleship with my brain in case of future attacks. I been on copaxone, and lead a healthy lifestyle until preparation for the move started and I got laid off due to covid. This move and a startup gig took a toll on me. Insomnia, drop in exercise, and pretty much mania this past month is what I highly suspect caused this attack. I was suggested I go on ocrevus, but the side effects are a concern. For example GF is an RN she could bring all kinds of stuff that don't mix with immunosuppression. I am leaning towards staying with copaxone and never letting a healthy lifestyle slip. Maybe moving out of this purgatory will also help.

Dunno I guess I am asking for some detached advice and and doing some venting. Anyone else?

[Vt-Freeheel]

Sad to read, wishing you the best. Alas nothing to offer re medication.

[NW_SKIER]

I have nothing medically to add. Just that my Aunt has MS and it has been a long road. I wish you the very best, and I am sorry to hear this unfortunate news. Vibes

[detrusor]

Stress of any kind (illness, temp swings, surgery, life stress, etc) can bring about an episode. The good news is that there tends to be recovery, the bad news (as with your vision) it tends to not quite be to baseline. My recommendation is to continue the healthy lifestyle and follow the recs of your neurologist. Ocrevus is more effective in studies and if I read it correctly it’s due to the immune modulation. That said, people are not at a huge increased risk of opportunistic infections....


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[splat]

Stay healthy and stress-free, daught. wish you the best. And I really feel we are blessed to have guys like detrusor around here to thow out a sensible outlook on health issues such as yours.

[Flounder]

I've got nothing really for you on the specifics of MS. I do know treatment has come a long ways. 15 years ago I got diagnosed with a rare autoimmune disease, churg strauss now know as EGPA. At the time based upon my symptoms I was told I had a 40% chance of surving 5 years so I do know the stress your are going through.

Obviously I've made it much longer than the 5 years and after the past year I've felt better than I can ever remember. Drug advancement has been critical and I think its happening with MS as well. After diagnosis I started what was at the time a new chemotherapy treatment which had good results. The real game changer has been biological drugs, for the first time I can see me living a more normal life. I've been on Fasenra for the past year and I can breath freely again. Been slowly tapering off several other drugs and by labor day I'll be off the evil prednisone.

Stay positive, limit stress, and push your doctors for the best treatment possible. I know there are a lot of new MS drugs out there. It may take a while to find what works best for you. It can be rough figuring out what works and what doesn't. Side effects are not fun. It's amazing how much energy and brain power some drugs can take out of you. It'll be a process to find out what works for you and there will be setbacks. Stay focused and open minded.

[Cocximus]

Thanks for the vibes. Overall I will feel surprisingly positive. Figuring out what works is quite ambiguous. It's hard to gauge if the treatment is working or the MS itself is dormant. I guess that is why I should side myself on the side of the treatments with highest statistical success.

Flounder thanks for sharing, glad to hear you have something like that in control.

[old goat]

The one thing I have to offer medically is that for the most part your GF doesn't pose a threat to you if you are immunocompromised. Assuming she is immunologically intact she should be at little risk of acquiring the kinds of infections that her immunocompromised patients have and at no more risk of acquiring normal infections than the average person, including you, would be being out in the general population. The one big exception being Covid 19 of course--so maybe you can postpone a decision on immunosuppresants until after we have a vaccine. Depending on how your MS is doing of course. You should both have flu shots.

And a reminder to vaccine skeptics (who probably don't read this forum)--this is the kind of situation that demonstrates why we need herd immunity. If daught should go on immunosuppresants in the future he will be at risk for Covid 19 even if he had already been vaccinated. so his survival may depend on him not encountering anyone carrying the virus.

It is interesting and maybe surprising how infrequently HCW's get infected at work other than C19. In the past HCW's often contracted TB from their patients; multiply resistant TB is still a worry; that's a big reason we have N95 masks.

[::: :::]

vibes, daught
stay safe & healthy & active

[Dantheman]

Seen this?

[Cocximus]

The one thing I have to offer medically is that for the most part your GF doesn't pose a threat to you if you are immunocompromised. Assuming she is immunologically intact she should be at little risk of acquiring the kinds of infections that her immunocompromised patients have and at no more risk of acquiring normal infections than the average person, including you, would be being out in the general population. The one big exception being Covid 19 of course--so maybe you can postpone a decision on immunosuppresants until after we have a vaccine. Depending on how your MS is doing of course. You should both have flu shots.

And a reminder to vaccine skeptics (who probably don't read this forum)--this is the kind of situation that demonstrates why we need herd immunity. If daught should go on immunosuppresants in the future he will be at risk for Covid 19 even if he had already been vaccinated. so his survival may depend on him not encountering anyone carrying the virus.

It is interesting and maybe surprising how infrequently HCW's get infected at work other than C19. In the past HCW's often contracted TB from their patients; multiply resistant TB is still a worry; that's a big reason we have N95 masks.

Good way to look at it, thanks. My biggest risk I would be the bigger huts in BC/AB, otherwise I never been too big on going out and crowds.

Seen this?

Yes, I did a bunch of research when I had the vision loss. I am mostly pescetarian, with some chicken occasionally chicken. Maybe lamb if I go to a restaurant. I really don't want to give up my carby vegetables. The only time I eat sweets is when I am skinning or cycling. Before the move I lived with my inlaws for 3 months. I did not really stick to my diet with them. My personal view with the multitude of diets is that all of them make people watch what they east, so they will have a positive effect on most people that start with a bad diet.

[Dantheman]

Yes, I did a bunch of research when I had the vision loss. I am mostly pescetarian, with some chicken occasionally chicken. Maybe lamb if I go to a restaurant. I really don't want to give up my carby vegetables. The only time I eat sweets is when I am skinning or cycling. Before the move I lived with my inlaws for 3 months. I did not really stick to my diet with them. My personal view with the multitude of diets is that all of them make people watch what they east, so they will have a positive effect on most people that start with a bad diet.

Cool. It's been a couple years since I watched the TED video, but IIRC grass-fed red meat is encouraged and there's a lot of starchy veggies that are allowed (sweet potatoes, parsnips, plantains, squashes). It certainly doesn't help that it's not known (again, IIRC) what actually causes MS or whether it's even a single disease. I'd definitely have your lifestyle factors dialed in tight before resorting to immunosuppressants. Good luck, it's an awful situation I wouldn't wish on anybody.

[iriponsnow]

Vibes.

[mtnwriter]

My sister was diagnosed a few months ago. She’s on an immunosuppressant and so far neurologist seems pleased with her reaction.

Scary stuff, wish I knew more but read this thread and wanted to pass along some vibes and wish you the best.


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[jackstraw]

I've had MS since 2011.

There is no doubt that under the MS 'umbrella' there are multiple subsets of this disease. Hence, the many different rx treatments available that work for one but not the other.

It is an inflammatory disease, so foods and herbs that help in reducing inflammation would seem to make sense.

I am in the camp that is an auto-immune disease. Some others are not. With that said, the most effective 'cure' for MS is HSCT (aka bone marrow transplant) at this point. But that is a pretty extreme procedure and complications can arise. And worse is it's not FDA approved in the US yet so many have been traveling to a relatively new facility in Mexico and paying 55k or so out of pocket to have it done. Dr Burt at Northwestern is the guy pushing for it in the US.

I will also add that it took The National MS Society years to even admit HSCT was even a possible treatment. They are funded by big pharma, so take what they say with a grain of salt. They need us sick. Once those who have been treated with HSCT they are no longer on rx meds.

Stay positive.

[skifishbum]

i was super blessed to share time with mr jimmie huega before he passed and participate in the vertical express fundraisers for many years at the silly tude
the program and "Can Do" attitude sure seem to help a lot of people
i send 4 u the can do spirit from the man

[Woolly the Mammoth]

I went to one of Jimmie Huega's conferences when I was a kid, circa 1989 in Beaver Creek. My dad has suffered from MS since 1973. While his outcome has been severe, treatments have come a long way and I'm hopeful that daught, jackstraw and many others with more recent MS diagnosis' will not suffer like my dad has. One thing that I have learned from my dad is that you can always find happiness despite the negative things that are going on in your life. His enduring contentment is a true inspiration.

[joeshek]

Diet is great, and exercise never hurrt. But get yourself a good doc. If they still have you on an interferon or something similarly effective, find another one. in CO, the RM MS Center at the CU hospital in Aurora is great.

Current class of meds are insanely effective, and there's more coming down the line.