Last reply 1 year ago
Anyone have MS + Another Auto-Immune?

Met with my MS Doc who thinks I might have MS and Sjogrens Disorder. She doesn’t think I don’t have MS, but 2 different blood tests have been shown to be abnormal. I have an appointment in the morning to see a Rheumatologist. I did a little researched Sjogrens and discovered that it can mimic MS symptoms and lead to a misdiagnosis. It didn’t seem like one would be “better” to have than the other, but treatment protocols are different than MS. I was just curious to see if anyone out there has Sjogrens and MS, how long have you had it and what your prognosis may be.

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edmontonalberta
1 year ago

Good luck tomorrow.


cameron
1 year ago

What a bummer – let’s hope that your neuro is on good terms with your rheumatologist. Presumably a combined approach is going to be necessary. Big hugs, Kay


stumbler
1 year ago

@1stn10 , I’ve no experience of sjogrens, but there’s some good information here :-

https://www.nhs.uk/conditions/sjogrens-syndrome/

There doesn’t appear to be that much of an overlap with MS symptoms, but you’ll be a better judge of that than me. Obviously, both being auto-immune conditions does pose questions.

Just be wary of the vaginal dryness problem! lol 😉


vixen
1 year ago

Hi there. I had sarcoidosis quite badly ten years ago, which is an autoimmune disease. When I started getting symptoms a year or so ago they thought it was returning; however, I got diagnosed with MS in Jan this year. They are two separate and distinct conditions. My daughter has another autoimmune condition so the theory is we have a familial predisposition to autoimmunity. Sorry this isn’t particularly helpful information, but there has to be a link with all these things. 🙂


cherish
1 year ago

Good morning to you

I also have another called Relapsing Polychondritis.

Good luck with your rheumatologist.

Lisa.


nutshell88
1 year ago

Good evening

I was daignosed with vision condition a year after MS Daignosis. Its caused by my immune system disorder which caused MS in the first place.
But i dont think they’d call this condition an immune illness or disorder itself because healthy people can develop it by different factors.

Its called “Keratoconus” and it is a progressive eye disease in which the normally round cornea thins and begins to bulge into a cone-like shape. This cone shape deflects light as it enters the eye on its way to the light-sensitive retina, causing distorted vision.

Just done a transplant last year in one of my etes because of it.


Anonymous
1 year ago

Yeah, that might be a problem!


Anonymous
1 year ago

Thanks for the different comments! I guess we’ll find out soon enough. The last post was meant for @stumbler.


potter
1 year ago

I have two skin autoimmune problem, I can’t remember how to spell them this morning. One of them is the scaly skin and the other is where you loose the color in your skin like Michael Jackson. They call it multi immune syndrome, fortunately the Tecfidera I take is what they treat it with. I was getting dressed yesterday for Thanksgiving dinner and my husband was starting at my arm. I asked him what he was staring at and he said white spots all over your arm. Fortunately I am a very pale person so most people don’t notice it. Potter


Anonymous
1 year ago

Thanks everyone for your posts! Saw Rheumatologist. She does not believe I have Sjogrens, but to be sure, she wants another blood panel to compare with the old one. One thing is for sure about auto-immune diseases, one learns how to be patient. Also, thanks for sharing some of your issues! @stumbler, that very concerning symptom turned out not to be a problem, although she didn’t test for it, so maybe?

@1stn10

My wifes mother actually has Sjogrens. So last year when my wife was diagnosed with MS the first question was if Sjogrens was a possibility. Unlike MS they ran a blood test and concluded most likely she didnt have it. Seemed like Sjogrens is much easier to diagnose then MS. I think each test is only 60-70% accurate but with several different tests put together it unlikely she has it.

As an aside HSCT thats used in chicago by Dr Burt treats both Sjogrens and MS in the same treatment. Still early, expesnive and risky for that procedure but the main take away is that it could be that certain treatments work for both at the same time in case it turns out you have both. Sadly rituximab (and consequently Ocrevus) was tried for Sjogrens and it didnt work. If you had rheumatoid arthritis for instance Ocrevus would likely work for both.


Anonymous
1 year ago

Thanks for the infor re: HSCT @californiadreamin! I think my MS Dr. was just being thorough with a little CYA mixed in. I’m excited about the Ocrevus. I’m curious about longitudinal studies. It seems like anything they come up with just might give you a brain infection or Leukemia. I heard MS is a $2 billion/yr. industry. That’s significant incentive to just create treatments v.s. cures. (could say that about any sort of chronic diseases). That being said, I would like to believe there are good people who actually look to end diseases like MS.

@1stn10 oh you heard wrong 🙂 Its $20 billion/year

Honestly good people cant push a new medicine through on their own anymore. However the good thing is there is so much money here that at this point finding the cure is worth a ton of money.

Dr Pender has been pursuing removing EBV as a possible treatment for MS and the results are really impressive to me. He apparently sold the rights to Atara which is a relatively small biotech company (in total that are only worht $500M. If they cure this thing, they are going to be worth much more then that). Maybe thats all the motivation anyone needs….

Here latest that I have seen on it:
http://onlinelibrary.ectrims-congress.eu/ectrims/2017/ACTRIMS-ECTRIMS2017/200440/michael.p.pender.safety.and.clinical.improvement.in.a.phase.i.trial.of.html


rachaellouise
1 year ago

A cure would be fantastic because this disease is a bitch ! Excuse my French ! It’s getting the better of me right now … And I don’t like it!
Praying for a cure everyday … praying for remission ….. I don’t want much
I hope they find a cure soon…no one should have to go through the things that come with MS!

Rachael ❤️ to all xx


rachaellouise
1 year ago

We want treatments but we want cures too… We don’t want to be a part of a billion dollar industry . We want it wiped out and gone ! Suffering is not nice for anyone !

Thanks

– I’m a lobbyist lol – part of a revolution


Anonymous
1 year ago

@californiadreamin, @rachellouise
Right! And that number will likely just keep growing. It would be a nice change if $ wasn’t even a consideration in making sick people better

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