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barefut

Scleroderma and Multiple Sclerosis (MS) Overlap

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We are a special group of people, I have to say. :blink:

 

But hearing that there are other special people out there may help me move past the "is this a joke" phase of grief.

 

And in all seriousness, I'm sorry for everyone's symptoms, and for those that are having to cope with family members who are ill in addition to coping with their own problems.

 

Barefut, absolute best of luck with your disability appeal. I do not have progressive MS. In fact in the world of MS mine is quite mild. Which is not to say it hasn't been devastating. But I think everyone here would get what I mean by that!

 

My primary issue is fatigue, for which I am prescribed medication. In terms of treatments there are several injectable medications that effect the actual progression of the disease (all ms progresses). The one I'm supposed to be on slows the disease course by about %10.

 

I was diagnosed about 12 years ago and it was a very quick process once it became obvious I had neurological problems (rather than just subjective complaints about fatigue). My only other constant unremitting symptom is spasticity, which after two years has calmed down to the point where I need only a small amount of medication to cope with the discomfort.

 

One of the things I've learned about living with MS (that I SO hope turns out to be true of whatever else I might be diagnosed with) is that if you are persistent and gentle with your body (and really patient), your body will heal and recover to some degree from whatever damage you sustain in an attack. It's not usually a complete recovery, but if I refuse to give up on whatever body function I've lost it usually comes back. But that might just be due to the fact that the brain and spine are capable of re-routing around damaged areas. Sound's sick, but that's my favorite part about MS. It always leaves me room to work around my symptoms. I really hope I reach a similar relationship with whatever this new thing turns out to be.

 

The symptoms that come and go are the following-tingling, pins and needles, sensations of heat or cold, numbness, mild intentional tremors, balance problems, optic neuritis and (we thought) dysphagia.

 

I'm really sorry you're having symptoms you can't explain. I know how terrifying that can be. Especially as a mother. I have a young son and while I feel confident about parenting with MS (I have family and friends to support us) the idea of having scleroderma entering my son's life breaks my heart. So, I'm very sorry. If you do indeed have MS, or something like it, and you are having sensory issues (the hot feet) one thing to watch out for is literally overheating yourself. Staying in the tub too long, or having the heat on to high, or going out in the sun will cause pins & needles, & unusual sensations to flare up with MS.

 

Oh. And stress and fatigue will cause MS symptoms to flare too. But you wouldn't be experiencing those now would you?

 

Thank you all for being here. I feel like less of a lab rat here, or at the very least like I've found my other fellow lab rats when all along I thought it was just me and my family's dysfunctional genes.

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Barefut, I have been diagnosed with both scleroderma and MS. It has been rather tryng. I have a great support system but still find at times for it to be all very overwhelming. My best advice is to never give up on yourself. Exercise and stay active as much as possible. Sonetimes it is difficult. I stumble more now than ever, run into things alot, and my hand has a mind of its own twisting whenever it sees fit. But I refuse to let these diseases take control of my life. Be strong and always smile.

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Hi Plowsgal,

 

Welcome to these forums!

 

I'm sorry to hear that you have a diagnosis of MS and scleroderma and I'm not surprised that you find it overwhelming at times. It's a good thing that you do have a strong support system around you and also a positive attitude, which does go a long way.

 

I do hope that you are under the treatment of a listed scleroderma expert as you certainly do require specialist knowledge to deal with such a rare overlap.

 

I've included a link to our medical pages about Multiple sclerosis and scleroderma which I hope you'll find interesting and informative.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I have been diagnosed with scleroderma , and before I was diagnosed I was debating if I had scleroderma or MS? I now wonder if I have both and presented the issues with my doctor who gave me a referral to a neurologist. I have the puffy hands, and calcinosis, and the red spots, and sores on my hands, I also have Raynaud's and Sjogrens. Most symptoms of MS I have except for the MS HUG.

 

I was an armorer in military and was around TCE, PCE, Benzene, Lead, and other chemicals; I also was on a EPA Superfund site where TCE was known to be high amounts in water we drank. But in regards to MS, I have the blurred vision, the lost for words, or at the beginning in 2008-2010, and that got better for me. I have terrible short term memory, nerve pain, cramps, inflammation in the gut, my liver is bad , my kidneys work about half now, and my heart has leaky valve and some hardening in the pericardium. I am a mess in short, but I was always physically fit prior to and during my time in service, I ran cross Country in High school and worked up to running 16 miles a day most days when in service. I think my physical fitness prior to my contamination and start of disease has saved me some from quick downfall. My hands and legs go numb at night mostly, and part of my right leg most days. Sometimes my eyesight is perfect, I assumed it was my high blood pressure, but second thoughts is why I want pictures of my brain. The VA did a spine MRI but failed to read them, and they don't do well in specialist area of care anyway, they could not even diagnose my scleroderma; I had to go out and get my regular doctor to refer me to a  rheumatologist, and they checked my ScL-70 which was 92, which most likely means diffuse. My face has pulled in around the mouth area, in fact I get cut lips in corner of mouth a lot. The chemicals I mentioned above are found in many household cleaners, and paints and paint thinners, model glues etc.TCE has been tied to scleroderma, and many of the Veterans from Camp Lejuene have also got scleroderma, so it has some environmental potential for so many men to have scleroderma and same exposures to certain chemicals.

 

My genetic background is long history in Ireland, beginning in area in North Africa, with the Basque that live between Spain and France. So I assume that we were basque and moved to Ireland when it was first being settled or close after. My last name is found abundantly in Ireland, Britain, Wales, Australia. America. My blood type and RH factor negative also confirms my idea of being basque, with most people with my blood are Basque and Moroccan . Whatever the case I have read many stories about TCE being in 40% of our water in USA. Really scary idea when they say it has such a bad effect on some of us with Irish background. I have seen communities that have big problems with this, and the cases of autoimmune and cancers like leukemia is higher than normal. 

 

So anyway I will try to let you know when neurologist gives me more. 

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Hi TCoffey,

 

Welcome to these forums!

 

I'm sorry to hear that you have been diagnosed with scleroderma and possible MS overlap and are suffering so many unpleasant symptoms. As well as the links on the previous posts on this thread which you may find helpful, I've included a link to our Causes of Scleroderma medical pages, Environmental and Genetics, in order to give you some more information.

 

Please do let us know the results of your appointment with your neurologist.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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