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Living with MS and Other Diseases

  • By Lisa Emrich Moderator

    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.

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  • By Sue

    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).

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    • By mazydaz

      after 2yrs of symptoms of exhaustion, blurred vision,tingling and less sensation hands and feet, occasionally this happens when I try to walk,, one of my feet will stay planted on the floor almost making me fall, occasionally dropping things, after walking in a grocery store for awhile,(thank GOD for grocery carts) the muscles around my knees tighten up and painful to bend them to get in my car, low back spasms, very difficult to go up stairs, after sitting for a little while, very stiff hard to stand up, urgency with voiding, I am constantly visiting bathrooms so I don’t have any accidents, every time I walk I have to concentrate on walking, it’s not automatic like it used to be…..my rheumatologist diagnosed me with undifferentiated connective tissue disease. but I really think I have M.S. I am going to pursue this with my primary care physician next week…..reading. “YOU KNOW YOU HAVE MS WHEN” really hit home with me!!! thank you for that.

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  • By janita lynn

    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!

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  • By Lisa Emrich Moderator

    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,
    Lisa

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    • By janita lynn

      lisa,

      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

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    • By Mary Blomberg

      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.

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  • By north-star

    I have two autoimmune diseases, MS and IBD (Crohn’s). Sorting everything out can be hard, having your neurologist and gastroenterologist at the same clinic helps. Lucky for me, methotrexate keeps the IBD in remission. There are things that limit its effectiveness, though, having records available to all my doctors is a good thing. Having a single pharmacy is also important. The pharmacist should talk to you whenever you’re starting a new medication. I’ve found they can be better informed than doctors about drug interactions.

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  • By Anne the Magnificent Mser

    I was DX with Hasimotos Hypothyrodism plus 2ndary progressive MS plus Sjogrens plus Raynauds plus Autonomic Neuropathy and Progressive sensorimotor polyneuropathy and a ton of immune gut issues not yet figured out. Gets kind of crazy and complicated when evey part of your body is affected.

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  • By Mary Blomberg

    I was diagnosed with RA in 2008. In 2010 strange things started happening. I had been taking the highest dose of Remicade allowed. MyRA was finally being controlled, but all of a sudden I was having uncontrolled high blood pressure, my oxygen dropped at night, I was having tremors, and my rib cage hurt to breathe. I coughed for 8 weeks. Finally I started seeing double lights. A brain MRI showed MS in several places. I changed from Remicade to Orencia. Things are not as good for RA, but MS is better. I have a SonixSound Vibration machine that keeps tremors and MS hug away. I take methotrexate, arava, placuinal, and orencia for RA. These drugs also cover my ms. I have been in a flare for awhile and am being tested for psoriasis. My daughter has a rare disease (aspartylglucoseaminuria), they have found female carriers of this disease have a stronger chance of developing RA. I am the only family member with RA. I found a cousin with MS.

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  • By Mel1981

    Hello all, I have MS and Celiac Disease. I was diagnosed with the Celiac first. I had my first relapse a few years later. My neurologist at the time was convinced it was not MS and somehow related to the gluten, also known as gluten ataxia. Since then I’ve had another relapse, same symptoms but much worse than the initial, and a pseudo relapse this last summer. So my current neurologist decided it was time to consider treatment. I went on Copaxone 2 weeks ago. And I also maintain a gluten and dairy free diet. I often wonder though if the two disease processes are related in some way, I guess we will never really know the root of the autoimmune cascade that began it all.

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  • By Carter22

    I have been dx with CIPD, Chronic Inflammatory Demyelinating Polyneuropathy. It’s very similar to MS. The only treatments are steriods and/or IVIg. I have spent a few weeks in a terrible funK, but I’m starting to deal with it.

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  • By omgck

    I was diagnosed with MS in 2004 and was on Rebif for 2 years but had to stop due to an extreame reaction. I recently went for a second opinion because after a very bad year of worsening symptoms my old neurologist wanted to put me on Tysabri untill Ocreluz was approved. Things became complicated when the eye doctor I was seeing questioned this and suggested I get another opinion. So now after all this time the second opinion neurologist is telling me I may never had had MS, although I do have some type of CNS demylinating disease….or possibly some rare form of MS that is out of the ordinary guidelines for thr official MS diagnosis…or MS and something else…..

    I will get his final opinion soon but now I am having a very hard time dealing with this uncertainty now. I have had decreased cognitive functions and visual/ spatial problems Besides the worsening fatigue over the course of ten years. Now I am not sure which neurologist to believe because the are both very highly regarded MS specialists

    Has this ever happened to anyone else in the MS community? It is very frustrating and depressing.

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  • By Mary Blomberg

    Have you had the blood test that is still in research? My MS doctor did not think I had MS, but submitted my blood to the team ( She is part of the team). It came back positive. My symptoms are not typical and it is difficult to know what is RA and what is MS.

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  • By omgck

    Oh I don’t think so Mary. I had a lumbar puncture that showed high protein level but no o-bands. I’m not familiar with the test – can you tell me the name and I will ask my doc about it. Thanks very much! It is interesting because I see I have some of the same symptoms that you mention having like the MS hug too.

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  • By lizette

    I have had bipolar and hypothyroidism for years. Last summer I was also dx’d with MS. This dx hit me like a mac truck. I’m 61 years old but my dr says I’ve probably have had it for at least 20 years. I have real bad fatigue and have developed recently optic neuritis. It’s really scaring me. I can’t use steroids because of the bipolar. They make me very manic. I have a lesion on my left optic nerve and that eye is getting worse. I constantly have dbl. vision and for the last 2 weeks have constant pain in my left eye. /when I blink or move my eye it really hurts and causes my whole head to hurt. It also causes my eye to feel gritty even though my eyes tear a lot. I take betaseron and my balance has improved majorly. I no longer get the leg spasms. My strength has come back but the eye problem really bothers me. My vision has dropped to 20/200 in that eye and am scared I’m loosing my vision in that eye. I can no longer tell the difference between gold and silver. My life is totally different now and I’m having a hard time accepting that this is my life now.

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  • By Magooze39

    In addition to MS, I have Fibromyalgia. It is not easy as they are both autoimmune disorders. For years I blamed the pain I was experiencing on my MS. Then this past Christmas they diagnosed me with the Fibromyalgia too. They have given me more medication to take & so far so good. I have my good days & my yucky days too. However, I do try to stay active if possible as this supposedly helps. I try not to let it get me down because that won’t make it any better!!

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  • By Carol

    I have secondary progressive MS and chronic back pain. I have monthly infusion of Tysabri and take large and small doses of Tramadol. Of course, there are plenty of times when I am suffering from brain fog and hurt real bad, but not sure if it is my MS that hurts or my back that hurts. I have been having side effects to the pain medicine, the previoous one I was given, I also had side effects. I’ll be seeing my neurologist soon, so we’ll see what he suggests that pain medication I should try next.

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    • By Erin Rush Moderator

      Carol, I am sorry you are dealing with side effects from your pain medication. I know that must be frustrating. I hope your neurologist has some good suggestions as to what you can try next to help get your pain under control. Thank you for sharing and please feel free to come back and update us, should you feel comfortable doing so. Have a good night! Best, Erin, MultipleSclerosis.net Team Member.

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