Scleroderma and MS

Hi ~ I just found this forum and think it's great! I was diagnosed with systemic scleroderma in 1998 and then in 2002 found out I also have multiple sclerosis. Does anyone here have both diseases and if so, how do you manage them together?

All the best!

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HI - welcome to the forum! I was diagnosed with SSc in 2009, but have had morphia since the 80s. I am currently undergoing neuro testing to rule out MS. I've been having a lot of neuro issues. I'd love to learn from you! Blessings.

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I was first diagnosed with MS and then a year later found out I had SSc. I went on Copaxon injections and later Betasyron for MS, but had to stop these injections when I started taking Methotrexate for the SSc. Doctors were afraid of suppressing my immune system too much. I wasn't too sad to give up the injections :). Currently my MS is stable, no changes in my MRI for 5 years. I have much more trouble with the SSc, so that is what I focus on treating. I do find that some of the medications treat both. I just have to make sure my rheumy and neuro doctor both know all of the meds I'm on.

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I was worked up for MS twice in the last 15 years. I have clean MRI's. I have 2 siblings with MS. I was surprised this last spring when my blood work showed positive SLC-70. My sisters symptoms were very similar to mine. That is actually why she got an MRI for MS. Mine was negative and hers was positive. Go figure. We're both doing well, but occasionally she'll say "Are you sure you don't have MS?". We have a very strong autoimmune history on each parents side. Both of us have children with autoimmune diseases as well.
Good luck.

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Very, very interested to see you initially had morphea, and it turned into systemic scleroderma 'breathe', as I have read of this developing many times, yet my doctors/rheumatologists/dermatologists/gyneacologist skin specialist/specialist soft tissue nurse say this will never happen!! (I have morphea scleroderma, raynaud's, mixed connective tissue disease, fibromyalgia, osteoarthritis, and ME). Over the last 38 years MS also been queried 4/5 times, but never pursued??

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I've also been worked up for MS by a neurologist and told that I do not have it. I have a lot of neurological symptom, but my neurologist said my problems are confined to the peripheral nervous system rather than the central nervous system. I have had 2 clear MRI's of my brain and spine. My neurologist doesn't know why I'm having symptoms. I have tingling and other weird sensations (burning or pricking or wet sensations) in my legs, a patch on my back, my scalp, one side of my face, my lips and tongue, and occasionally in my hands/arms. I also get migraines with an aura. I have blurry vision in my left eye sometimes. I sometimes get weakness in my legs. I get vertigo and heart palpitations and have trouble regulating my temperature (flushing and chills). Occasionally I get muscle twitches in my thighs and under one eye. Occasionally I get tremors in my hands. But it all comes and goes from hour to hour and day to day. I was told if it was MS, then it would be a big relapse that lasted days, weeks, or months and slowly improved. It would not come and go the way it does. I have some days where I feel normal with no neurological symptoms, particularly in the hot weather so my theory is that it's circulation-related. My neurologist and rheumatologist have no idea. It's frustrating.

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At my last appointment, my rheumatologist again said I might have early MS. She is giving me a referral to a new neurologist (mine has moved to another hospital). I'm skeptical. I'm curious: what symptoms initially led to your diagnosis?

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Thank you, everyone, for your replies. I've been on copaxone for all but a couple of years since my diagnosis. My neurologist assumed that since I hadn't had any serious MS flares, there was a possibility that all my symptoms could have been due to Ssc. The Rheum specialist I was referred to in Boston was known worldwide for his work with Ssc. He told my neuro that it was impossible to have the two diseases together. If he were still alive, I'd like to see him just to prove that is indeed possible and I am proof! Right now both diseases are flaring. I've been on IV steroid treatment for my MS. Tests have shown that my lung function is decreasing (scheduled with a specialist next week) and I'm developing trouble swallowing. GERD has always been an issue, as has IBS. Both problems show up with both illnesses. Next step is a complete GI series to check for ulcers, narrowing of my esophagus and diverticulitis. Thankfully, my neuro has become a true friend. After all the test results are in, I'm going to ask her to come to my rheumatologist appointment so the two of them can review the results together and decide on a treatment plan. At this time, I'm not on any meds for Ssc except 81mg aspirin for the Raynaud's. The icing on the cake is that I also have fibromyalgia. It's such a relief to know that I'm not the only person dealing with both diseases.

Larsonsmum, if you have symptoms of MS, please push for an MRI and other tests to confirm whether or not you have it. None of the medications to slow progression are fun, but you should be on one if needed. GrandmaM, I'm thankful that your tests for MS have come back negative and pray that continues. Remember that many symptoms of MS and Ssc are very similar. Laurabro, I had to look up methotrexate. I don't think I'd be a good candidate for it. I live on NSAIDS and have other contradindications. It will be interesting (and I'm scared, too) to find out what's going on with my lungs and if there is a treatment for it. My scleroderma has been quiet for several years. To have both that and MS active right now is frightening. It's good to know you all are here.

Lesnaia was a very sweet cat I imported from a breeder in Russia when I was a Siberian cat breeder. My name is Mary. God bless you all ~ you are in my prayers.

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Hi Zoe, I have the same symptoms as you're having, plus others. From what I understand, it's possible to have MS for a period of time (sometimes years) before it shows up on MRIs. My niece is going through the same problems. She is in Buffalo and has seen one of the neuros at the MS center there. An MRI in September and one she had two years ago show no signs of MS. Her neuro in Buffalo believes her problems are stress related. The way it was explained, her body knows that she's stressed even though her mind doesn't register it. She's now on 2 antidepressants and is allowed up to 3 Klonopin a week if her trembling becomes severe. She wondered why no more than 3. It's because people like me become dependent on it and go through withdrawal if I miss even one pill a day (I'm on 4 a day). Just throwing the diagnosis of stress out as a possibility to discuss with the new neuro.

I think I had MS for at least 10 years before being diagnosed. Some of my original symptoms included my left knee giving out under me while walking (now it will give out just standing - I usually keep my hand on furniture or the wall), blurry vision that would come and go, a very itchy scalp and tingling sensations and fatigue. With 3 young sons to run after, the fatigue seemed normal! I have had problems with headaches all my life, but started having migraines with and without auras in the mid-90's. My doctor at the time told me it was due to "female problems". Off subject, but does a dr ever tell a man that his symptoms are due to "male problems"? We moved in 1999 so I didn't have to deal with him anymore. I went to my new PCP on a Friday in October 2002 after having a migraine for 3 days with no relief. He gave me an injection (don't remember what it was) and said to call him on Monday if it wasn't better. It wasn't. He referred me to a neuro who couldn't see me for a month, so I called our "family neuro" who was already seeing two of our sons for Tourette Syndrome. She saw me that day and sent me for an MRI. (She suspected a brain tumor.) A few days later, she called and asked me to go to the hospital for a lumbar puncture. At the hospital, she explained that I had plaques on my brain which meant possible MS. The LP and evoked vision test confirmed the diagnosis. My "migraine" lasted for three miserable, solid years. Headaches are still my worst MS problem. I have maybe 5 days out of a month without one. IV steroids will break the cycle for a few weeks. Neuro and I were chatting on the phone the other day and she mentioned that I could have a monthly steroid injection rather than the occasional infusions. I want to discuss the pros and cons more with her, but think I will start that.

IMHO, you should absolutely follow through with the referral to the new neuro. Be sure to take a list of all your symptoms and any questions you think of before the appointment. If this dr suggests that it's impossible to have both diseases, find another neuro. Ask about tests other than an MRI. An LP is unpleasant, but confirmation one way or the other is important. I hope you get an understanding neuro and the answers you need.

All the best ~ Mary

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Our member, NoGo, also has both MS and scleroderma. She has all the same constellation of signs and symptoms that I have (and the same antibody - anticentromere), except that I have not been officially diagnosed with MS. That's the only difference in our long list of signs and symptoms. In 2003 I did have an episode of weakness that arose suddenly overnight and took months to go away. I had an MRI of the brain which showed no MS plaques. Between then and 2007 I had two more such episodes which again took months to resolve. I did not return for new brain MRI's.

In 2007 I started supplementing with lots of vitamin D and have had no more such episodes. Since then I've found research articles that say that vitamin D is very helpful in MS. Coincidence? I did have a confirmed deficiency of vitamin D. And other research has shown that both MS patients and scleroderma patients tend to have vitamin D deficiencies.

If I ever have another weakness episode, I have sworn to have a new brain MRI. But so far, so good. I continue with the Vitamin D.

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Hello to everyone
Please bear with me as I'm not very computer savy. However I have M.S. and Undifferentiated Inner Connective Tissue Disease, which would be Scleroderma and Sojerns, so far as we know. I say that because these diseases are very sneaky, at least for me they are. Anyone out there with info. or wants to talk about these issues, please send me a friend request. I'm fairly new to the site, I guess it's been 3 or 4 weeks. Thanks to everyone. Suzyqz

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Dear GrandmaM
You mentioned your children with autoimmune diseases. Is there any useful info. you can share with me about the genetics on M.S. and Undifferentiated Inner Connective Tissue Disease. I tried to search the net for any info. I just wound up frustrated and still no useful info. I have 2 girls, 26 and 30, so far so good. I got diagnosed around 10 years ago after suffering for 10 years cause the doctors in my area were not able to diagnosis my conditions. I had to go to a much bigger hospital, Hershey, they had it nailed down in 6 weeks of testing. I only wish I would have went sooner! When I got my diagnosis, both of them my first thought was OMG did I give this to my kids?? Thanks GrandmaM Suzyqz

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Dear Zoe123
I just wanted to wish you good luck for your appt. I know how frustrating it can be going back and forth with the different doctors.
Then there comes the worries about what they will say, I'll pray for you Zoe123, be blessed.

Suzyqz

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