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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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