Living with MS and Other Diseases
I have been diagnosed with both multiple sclerosis and rheumatoid arthritis. Living with two autoimmune diseases can be challenging. Sometimes I don't know which disease might be causing symptoms or dysfunction. Finding an appropriate treatment can also be tricky.
Do you live with more than MS? If so, please share your story.
I have three autoimmune diseases: MS, hypothyroidism, and type 1 diabetes. Very challenging indeed. I found out about my MS because I have numbness & tingling in my feet/lower ankles, which we thought was diabetic neuropathy. But my endocrinologist said it wasn't presenting the way it usually does, and my neurologist then sent me for an MRI and spinal tap, and bingo! Plus I have other symptoms I was attributing to my age (54 now). The hardest part is adjusting to a new MS med while making sure it doesn't adversely affect my diabetes. Most everything causes my sugar level to rise, although I'm hearing that Tecfidera causes it to drop (planning to start on that in September when my daughter's off to college).
Fatigue is a very common symptom for neurological diseases.
It is not the same sort of thing as being tired from no sleep, it is described differently by people but all agree it is severe and debilitating.I have had MS for a very long time (decades of being misdiagnosed). Family connection that I never knew about. I was on monthly Tysabri infusions for nine years until I developed too many problems. I got a new neurologist, who truthfully was a MS specialist. After testing and approval I made it through my first year of taking Mavenclad pills for two months and nothing until the next year. Recently though I have developed a terrible itchy rash, blistery even and also a itchy scalp. I will be going to a dermatologist next week.
I also recently developed a very crippling arthritis of my hands. They look like claws. It's so upsetting, I used to be a super fast typist.
I have MS and Chronic Fatigue Syndrome/Epstein Barr.
Like you, I never know what is what sometimes!!you never know if people will continue to read these posts after so many months, but i will throw this out anyway. i was diagnosed in july 2013 and shortly after found out i also have rheumatoid arthritis. i can look back and see both for years now that i know. i feel like the ra is pretty centralized in my joints -- knees, ankles, wrists... and is drastically helped with advil and joint supplements. im just guessing that the ms is everything else!
very curious if others are tackling the issue of ra drugs with ms. from everything i research they make ms symptoms worse. any experience with that out there?
best to all!
RA and MS share many drugs. My doctors control both my diseases. I take Methotrexate, Arava, Plaquinal, and Orencia. There are 3 biological that work for RA that do not worsen MS. Ritoximab is a gold standard MS drug that MS doctors are not allowed to prescribe because of a new drug.
Hi Janita,
I'm glad that you've added to the conversation. I'm sorry to hear that you also have both MS and RA. It really can be difficult to get a handle on each of these diseases.
Like you, my RA primarily affects common joints: wrists, fingers, toes, ankles, shoulders. I haven't had any problems with organs being affected by the disease, or by the treatment for the disease.
At first my rheumatologist prescribed methotrexate, sulfasalazine, and plaquenil because of the pre-existing MS. In 2009, I switched to Rituxan and methotrexate only. That make a huge difference in both diseases for me.
The concern with RA medications is specifically with anti-TNF therapies (ie. Humira, Enbrel, etc) which are contraindicated with demyelinating disease (meaning you shouldn't use them if you have MS). There are other choices, however, which can be considered.
You may want to have your neurologist and your rheumatologist consult with each other regarding your treatment choices. My doctors send notes to each other following every visit I have to keep the others informed. That can be very helpful.
Good luck. I hope that you continue to do well (as it sounds like you are right now).
Best,
Lisalisa,
thank you!!! so nice to hear a voice! i appreciate your wisdom, although im sorry you have to have it. i didnt realize there was a family of drugs that would not exacerbate my ms symptoms; what a relief to know there are more options. i pray we all continue to do well and love having a network. 😀
janita
I am on Orencia, arava, plaqunol, and methotrexate.
The first two happen to be drugs that are used to treat MS as well.My ma doctor thinks they are working. I am questioning how they are helping my RA. Remicade worked a lot better on the RA.
