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I'm new and confused...

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#1 Good Humor Lady

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Posted 26 September 2010 - 04:00 PM

As I said, I'm new here and extremely confused. I haven't been diagnosed with scleroderma yet, but two of the specialists I see are sure I'll get a positive diagnosis. I have a lot of issues with my swallowing, esophagus, lungs, intestines, bladder and probably more that I don't know about. They both want me to be tube fed but I really don't care for the idea and need to know more about it before I do it. They told me I'd never eat normally again-that sounds scary in itself.

As far as that CREST thing, I think I only meet 4 of the 5 criteria. If the telangiectasia part of it doesn't include rosacea instead of the spots or red freckles all over, then I only meet 3.

One side of my face is pulling back toward my ear, I get Botox injections to release it as much as possible. Some of my physicians say it's from the radiation, others say it can't be, I was radiated more than 20 years ago. I read an MRI report once that said I had something other than the radiation attacking my face muscles. None of my doctors did anything to check it out, including the ordering physician.

I have arthritis, don't know what kind for sure, fibroyalgia & I'm hypothyroid. Every ANA test that I've had turns up negative. How can it be when I have arthritis and I'm hypothyroid? Those two are autoimmune diseases and should give me a postive.

My hand is kind of curling, it doesn't lie flat like the other one. It hurts if I try to straighten it...The other hand is starting but isn't nearly as bad. My sister, who has scleroderma, says it's all part of it. Is that true?

I have pain in my elbows almost all of the time and lumps that come and go. In fact, I seem to have lumps all over that aren't fatty tumors because they're hard and they hurt. One of my doctors said they're neuromas because they're in a row-are they part of the disease, too? I also have burning pain in my shoulders & it's quite painful at times. No lumps on my shoulders that I can feel, anyway.

What I'd like to know in addition to my above questions, does anyone out there have scleroderma that doesn't meet all the criteria for CREST? And/or not have a positive ANA?
I'm anxiously awaiting your answers and thanks so much for responding! :bye:

#2 red


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Posted 27 September 2010 - 04:24 AM

Hi and welcome to the forum, although sorry you're having the problems that have brought you here.

I was diagnosed with limited scleroderma (crEsT)2 years ago, even with a negative ANA, and it sounds like you have a lot more going on than I have! For me, the diagnosis was made largely due to my swallowing/esophagus/stomach/intestinal/rectal dysmotility, along with voice hoarseness, fatigue, painful joints, telangiectasia on face (which a couple of my doctors had previously diagnosed as rosacea). I have only very mild tightening of skin on my face and across my wrists and the knuckles of my fingers, and have bilateral carpal tunnel syndrome. Since my diagnosis, I've developed mild Raynaud's and early signs of cardiac fibrosis. I don't have any calcinosis or sclerodactyly (the C and S of CREST), so yes a diagnosis can be made without having all the criteria. I'm sure many will chime in on this, the signs and symptoms of scleroderma are very unique and very different among us.

Even more important than the diagnosis itself, however, is treatment of your symptoms and difficulties, as well as monitoring you for new problems. Are you under the care of a rheumatologist, preferably one experienced in scleroderma, and how are your doctors treating your GI and lung issues?

Looking forward to getting to know you,

#3 Amanda Thorpe

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Posted 27 September 2010 - 06:48 AM

Hello Good Humour Lady

Welcome to the forum! Scleroderma is best diagnosed on a combo of clinical symptoms, test results and bloodwork because bloodwork alone can be a bit of a red herring. For example I have a negative ANA but have diffuse scleroderma with heart involvement and other on the forum have positive bloodwork with no symptoms and may never have any.

CREST can also be known as limited scleroderma as not everyone has the full C (calcinosis) R (Raynaud's) E (esophagial problems), S (sclerodactyly) T (telangiectasia).

I have never hear of neuromas as being related to scleroderma.

It's interesting that your sister also has scleroderma, which type does she have?

Take care and keep posting.
Amanda Thorpe
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#4 Chimama



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Posted 27 September 2010 - 10:13 AM

It sounds like you really need some answers. From my research it seems it's possible to have the disease without positive test results. Just as one can have positive test results but not the disease.

Maybe you could get a biopsy on one of the lumps and find out what at least that issue is? And if possible try to see a scleroderma specialist for the overall picture. A rheumatologist may be able to decipher the type of arthritis you have. I'm not sure if I'm correct so please don't quote me, but I think I recall reading somewhere how rare it is to have two siblings with scleroderma. If you both do indeed have it, it'd be great if you could see the same doctor. I wish you the best and hope you find answers soon.

#5 enjoytheride


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Posted 27 September 2010 - 03:20 PM

My rheumatologist told me that meeting 3 of the 5 conditions of crest is enough to give the diagnosis. This is a difficult disease because so many different things can happen- most people do not have all of them.
When you visit your doctors, do you have someone with you to help you get answers to your questions? I know that sometimes I find my brain whizzing around what the doctors are saying and not being able to get it together enough to ask the right questions.
Are you on any meds specific to immune diseases? Are the specialists planning some treatment beside a feeding tube?
I can see that such wide ranging problems would be scary and confusing- especially without some clear guidance from your doctors. But you have come to the right place for informtion.