MS DMTs for ME

[WinterWren]

I have ME and was recently diagnosed with MS. Now I’m about to have a conversation with my neuro about what MS drug (disease modifying therapy) to try first.

Apparently... I’ll have some say in the matter, so I’m being way optimistic and hoping I’ll find something that helps ME symptoms...

Any experiences or thoughts out there? I know about the anecdotal report of copaxone helping a pwME (Rachel Riggs) and of course there’s all the stuff (good and bad) about Rituximab but I don’t think that one’s an option anyway. And I’m just guessing that since Ritux didn’t help pwME in trials, other CD20 depleting drugs like Ocrevus wouldn’t help either.

Tecfidera (dimethyl fumarate) looks interesting... Like copaxone it alters the T cell population somehow but it’s mechanism of action isn’t entirely understood. It’s more affective for MS than copaxone, so that’s a plus too.

I wish I could read more easily right now... so frustrating. If there really is an autoimmune subgroup of ME, maybe I’m in it and these drugs might help me ?
They are just as likely to make me worse but fingers crossed.

 

[Judee]

I don't know if your doctor would be open to something like this but I remember reading about a protocol by Dr Coimbra and watching a video of his that was translated on YT.

I also read a book from a lady who was being treated by him. It's been a long time but I think this is the book I read: https://www.amazon.com/Multiple-Scl...swatch_0?_encoding=UTF8&qid=1625625036&sr=1-2

Anyway, I mention it because I did read of a couple of people with ME that said it helped them.

I did also try a very modified version of it. My ME/CFS did feel a little better on it but I was nervous to continue because my teeth were getting loose and my gums were starting to bleed so I think all the increased activity in my body was using up my Vitamin C and making me deficient in that.

Plus, for that kind of thing it is really good to work with a doctor and keep being tested along the way. There are Coimbra doctors and there is a website to find them but when I do the internet search it isn't coming up that easily right now. I'm sorry.

Here is another site that talks about it. https://overcomingms.org/latest/coimbra-protocol-vitamin-d-ms

I don't have MS. At least I have not been diagnosed with it.

My PCP that retired about 6 years ago did not want to test me because he said a diagnosis of that on a medical file could make it a nightmare to get insurance. That was back around 2006 when he said that.

Anyway, hope something helps you in your healing journey.

 

[WinterWren]

I don't know if your doctor would be open to something like this but I remember reading about a protocol by Dr Coimbra and watching a video of his that was translated on YT.

I also read a book from a lady who was being treated by him. It's been a long time but I think this is the book I read: https://www.amazon.com/Multiple-Scl...swatch_0?_encoding=UTF8&qid=1625625036&sr=1-2

Anyway, I mention it because I did read of a couple of people with ME that said it helped them.

I did also try a very modified version of it. My ME/CFS did feel a little better on it but I was nervous to continue because my teeth were getting loose and my gums were starting to bleed so I think all the increased activity in my body was using up my Vitamin C and making me deficient in that.

Plus, for that kind of thing it is really good to work with a doctor and keep being tested along the way. There are Coimbra doctors and there is a website to find them but when I do the internet search it isn't coming up that easily right now. I'm sorry.

Here is another site that talks about it. https://overcomingms.org/latest/coimbra-protocol-vitamin-d-ms

I don't have MS. At least I have not been diagnosed with it.

My PCP that retired about 6 years ago did not want to test me because he said a diagnosis of that on a medical file could make it a nightmare to get insurance. That was back around 2006 when he said that.

Anyway, hope something helps you in your healing journey.

Wow so interesting! Thanks for the links. I didn’t know about this protocol but my doctor actually prescribed me high dose vitD pills (50,000 IU once per week). I just started that recently. I can see why monitoring PTH and limiting calcium would be good (mentioned on those sites).

For now I’m also getting a lot of sun even though it makes me feel sick. It just makes sense to me that this might be healing for MS.

Hope you can get assessed if you suspect MS for yourself

 

[Martin aka paused||M.E.]

I don't have MS. At least I have not been diagnosed with it.

My PCP that retired about 6 years ago did not want to test me because he said a diagnosis of that on a medical file could make it a nightmare to get insurance. That was back around 2006 when he said that.

Funny. That’s exactly what my GP told me about ME/CFS. And he was right. Society and Medical System will make the same mistakes again and again…

 

[Zebra]

@WinterWren

An MS diagnosis on top of an ME diagnosis?!?! That seems like a lot to process. May I ask how you are feeling about all this?

If there really is an autoimmune subgroup of ME, maybe I’m in it and these drugs might help me ?

My understanding is that MS is an autoimmune disease mediated by T cells. So, I would assume that at least some treatment protocols would target T cells only, thus not affecting/improving B-cell autoimmunity, such as Lupus, Sjogrens, MCTD, etc.

When you are able, I'd be really interested to hear about *your* process of getting diagnosed with MS. ME patients often have a very difficult time getting neurologists to order MRIs and spinal taps.

My best regards!
Z

 

[WinterWren]

@WinterWren

An MS diagnosis on top of an ME diagnosis?!?! That seems like a lot to process. May I ask how you are feeling about all this?



My understanding is that MS is an autoimmune disease mediated by T cells. So, I would assume that at least some treatment protocols would target T cells only, thus not affecting/improving B-cell autoimmunity, such as Lupus, Sjogrens, MCTD, etc.

When you are able, I'd be really interested to hear about *your* process of getting diagnosed with MS. ME patients often have a very difficult time getting neurologists to order MRIs and spinal taps.

My best regards!
Z

I’m feeling like my future is even more uncertain and my hopes of an ME treatment coming and my life getting back to normal someday... nope that’s not happening! I’m so used to my life being turned upside down from ME that another diagnosis isn’t that shocking. Not like it would be to a healthy person at least.

The process might be good to share but it’s kinda long sorry... so I asked to be assessed for MS 4 years ago, telling my doctor it was supposed to be ruled out, she actually listened. I had a brain MRI and a neuro appointment. I got the all clear. MRI showed 2 small spots but they were “non specific” so not a concern (could be migraines or aging).

Then earlier this spring I had major skin sensory changes all over my left side, a lot of it started all in one morning. Skin felt kind of frozen all over then muscles went weird and stiff.

I went to a doctor (my doctor is on leave) who said it’s a large area of nerves so I’d need blood tests and follow up. Different doctor for follow up said I shouldn’t get ahead of myself about needing to see a neurologist... did nothing. So I talked to a third doctor who ordered a brain MRI and referred me.

Brain MRI was the same, normal. But the neuro found my reflexes were different on the left side and also said my symptoms indicated issues with the spine.

I had a spine MRI that showed several lesions. These ones were “specific” to MS. I guess I lucked out with a good neurologist (a respectful one).

A lumbar puncture confirmed it.

Four years ago it wasn’t a very clear picture of MS so I can’t totally blame the last neuro... but I do wish I’d had a spine MRI... I’d had nerve issues and unexplained vertigo for years so who knows when it started? 10 yrs ago possibly...

 

[Zebra]

The process might be good to share but it’s kinda long

You are kind and generous to share your story with me. Thank you.

I'm glad you have a definitive diagnosis and I, truly, hope the MS treatments will make you feel better than you have in a very long time.

Please keep us posted and let us know how you fare with different treatment options.

My best regards!

 

[WinterWren]

Thanks, I will! 🤞

 

[Marylib]

Thanks, I will! 🤞

Thanks for your willingness to communicate as you face all this new information. I knew someone else who had been diagnosed with ME who eventually got that MS diagnosis. Hope you can work out a treatment that helps you feel better very soon.