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Help with Symptoms

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5 replies to this topic

#1 fri83


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Posted 17 May 2008 - 09:28 AM

This is my first post here, I'm hoping for some help. I feel bad every day and cannot get a diagnosis. I was hoping that you could give me your input on whether this may be scleroderma or not.

My symptoms are:
thick hard cuticles on feet and hands
Raynauds syndrome-just diagnosed
very dry skin on entire body
itching on entire body-sometimes worse in evening
dry, scaly patches on ankles, elbows, and face
small red dots on skin
fatigue-but inability to fall asleep
stomach pain-sharp
joint pain
allergy problems including bronchitis
small blood vessels showing on face
thinning hair

I went to the dermatologist this week; he gave me steroid cream to see if it will help. I go back in 3 weeks, if not better he said will do a skin biopsy.

Please help!!

#2 CraigR


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Posted 17 May 2008 - 12:47 PM

Some of the things that you mention are definitely possible symptoms of scleroderma. You should find a scleroderma specialist (see listings on this website). Most doctors (and even some rheumatologists) are clueless about scleroderma.

There are several good tests for autoimmune diseases. The lab order that I get from my rheumatologist says "Lupus Analyzer Panel". It tests for many specific autoantibodies and is very specific for these diseases (not just Lupus). Don't let them get away with just an ANA test (though this is useful).

Another interesting (and inexpensive) blood number to know is your "sed rate" or "ESR" (erythrocyte sedimentation rate). It is a non-specific test for inflammation which means that if it indicates inflammation, it could be from anything - the flu, cancer, arthritis, etc.). It commonly hovers above normal for those with these diseases. Even though non-specific, it's a good way to know if you have inflammation issues.

Good Luck,


#3 jefa


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Posted 17 May 2008 - 01:12 PM

Hello, fri83, and welcome to the ISN Forums. Craig is right in saying that many of the symptoms you list are experienced by persons with scleroderma. I am not a medical professional, but many of the symptoms you list can have other causes. If you suspect scleroderma, you will get the best information from a scleroderma specialist. This link is a list of Scleroderma Experts - hopefully you will find one in your area. In the short term, your dermatologist is a good place to start and you should probably also get a referral to a rheumatologist on the basis of your joint pain. Your primary care physician should be able to help you with some of the individual symptoms such as the gastrointestinal involvement and Raynaud's phenomenon. In the meantime, read some of the other posts and feel free to post and ask questions.

Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 janey


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Posted 20 May 2008 - 12:23 PM

Hey fri83,
I agree with Craig and Jefa that your symptoms are common symptoms of scleroderma, but only a knowledgeable doctor familiar with scleroderma will be able to tell if you have scleroderma or something else going on. Please check out the link that Jefa provided and see if there is a scleroderma specialist in your area. If not, at least see a rheumatologist. These are doctors that specialize in rheumatic disorders of which scleroderma is one along with many others.

I'm glad that you have joined the forum in search for information. Scleroderma is a very complex disease and is different for everyone. So it's good to see what others are experiencing. Please let us know how you are doing and how your appointment goes. There's lots of support here. Welcome!

Big Hugs,
Janey Willis
ISN Support Specialist
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(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 fri83


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Posted 20 May 2008 - 01:31 PM

Thanks for your input. I am so tired of feeling bad everyday. My primary care physician says most of my problems are probably fibromyalgia. I'm not sure I agree since she has not done any pressure point tests. She just hears me saying that I am tired and achy. She has done the usual routine blood tests that only show my WBC rising. She did a sed rate about 4 months ago and it was only 14. I just feel like you have to be half dead before doctors try to figure out what's going on. I will probably just continue to feel bad and eventually they will figure it out. However, I do go back to the dermatologist in a couple weeks about my skin; he did say he may do a biopsy then, maybe that will show something.

Thanks again

#6 susie54


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Posted 21 May 2008 - 06:23 AM


I just wanted to say welcome and yes, you do sound alot like a connective tissue disease. I have Mixed Connective tissue disease and my sed rate never went over 21. It is usually around 10. Finally all of it showed up in antibodies. I would see if you could go to a rheumatologist. Even if it takes awhile to get in, I would think you might get some answers there. It usually takes awhile to put all the pieces together even in the best hands. Mine was four years before the lupus/sclero mix was understood. At least find someone who could help with your achiness. Susie54