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Biomarker for Diffuse Scleroderma skin has been discovered!


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Scleroderma?


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#1 ozzy69

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Posted 08 May 2008 - 06:37 AM

Hi Everyone,

Yesterday I went to my second rheumatologist appointment to get back the results from my blood test. I left there more confused then in the beginning. All my test were fine and I had a negative ana. I do have extreme raynauds ( about 7 years) , IC ( diagnosed about 2 years) , IBS ( about 3 years) and Fibro. The rheumatologist thinks I have Scleroderma. He gave me the iformation on it and put me on procandia for the Raynaud's, and wants to see me back in 4 weeks.

My complaints are joint pain, bad raynaud's, numbing of hands, arms, feet. At night it is hard for me to get comfortable because my arms hurt at night. I have a pain under my right lower ribs that feels like my kidney. When I was diagnosed with IC though a hydro my bladder was getting hard and smaller. I had lots of bladder pain before treatment. I have chest pain that wakes me up at night sometimes. I have been to a kidney doctor for the kidney pain, but he did not find anything wrong at that time.

It is so frustrating not having answers. How often do people have Scleroderma with a negative ana test?

Any information would be great!

Thanks

#2 jefa

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Posted 08 May 2008 - 07:36 AM

Hi, ozzy69. I am sorry to hear that you may have scleroderma, but I am glad you have found this site, one of the best for information and support. I am curious about the basis of the scleroderma diagnosis. Do you have any skin hardening at all? It is not that typical to diagnose scleroderma without an ana or some strong clinical evidence. Here is our page on Interstitial Cystitis (Bladder Inflammation) which may be of interest to you.
Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#3 Leslie R.

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Posted 08 May 2008 - 08:20 AM

Hi Ozzy 69,

It seems to me that you have Scleroderma, from all the symptoms you have, I have all those symptoms the Raynaud's, Muscle joint pains in my hands, feet back. Scleroderma is a difficult disease to diagnose, a dermatologist and rheumatologist can diagnose this disease. Although the ANA test came back negative, Scleroderma comes in many stages. What I have been doing since I have been diagnose with Scleroderma, Lupus and Vitiligo. I personally write down everything including questions, when I go to my doctor's. If you do not understand the information they giving you, is always good to take someone with you at your appointment. I wish you lot's of luck and remember you not alone.

#4 ozzy69

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Posted 08 May 2008 - 08:22 AM

Jefa,

I am not sure what the basis of the scleroderma diagnosis is. I don't think I have any skin hardening that I know of. He keep looking at my face, hands & feet. My raynauds is really bad. I am so sick of people saying "gross, your fingers are so blue/purple. I am a 38 year old women and have noticed some chages to my face, but I thought they were just from age. In the curve of my feet the skin feels really tight. My joints in my fingers have been sore and stiff. My legs get really stiff if I sit for any amount of time. My IC is servere. I have stomach problems (IBS), but I do not get heartburn. I do have chest pain and kidney pain ( that drives me crazy) . I have the tender points of fibro plus pain.

None of it makes sense to me. In 2006 my gallbladder just stopped working. They took it out. Also in 2006 my ovaries were wraped around scare tissue from my hystro at 24. They removed both ovaries in july 2006. Then in Dec. 2006, thay found a mass where my ovaries were and had to go in and remove it. Needless to say all my pelvic pain was from IC anyway.

Even though my blood work came back negative, he did not like the way my raynauds looked and all the other things that I have. None of it makes since to me. I started all of this with hives for two years straight and then came the Raynaud's, and all the other stuff.

Thanks for the information on IC. I finally have that under control for once. New treatment and recuse instills.

Thanks
Nina

#5 CraigR

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Posted 08 May 2008 - 09:14 AM

Do you know if your blood test include a panel that would check for autoantibodies? It would seem very strange to have your symptoms and not have any positive autoantibody test for autoimmune disease.

Craig

#6 ozzy69

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Posted 08 May 2008 - 01:16 PM

Lesli,

Thanks for the advise. I do need to write down everything. It took almost four years before I was finally dxed with the IC. The doctor kept wanting to remove stuff and then they would say" you will better now" :blink: ? Finally my primary Dr. sent me to a uro and they did the hydro and look at my bladder.

Craig,
I called the doctors office today and they are mailing me all test that he took, so I can look over them. When he gave my results he said your blood work looks fine. There was something a little out of whack, but that is all he said. He did say I tested negative for the ANA, but I think you still have scleredema. He printed some information about scleredema and said I want to see you in 4 weeks. In the paperwork he gave me it said you don't have to have a postive ANA test. My doctor is about 1hr & 15min. away. He is the only rheumatologist I could find for my insurance. He did say that he wanted me to go have a heart stress test. Also last time I had my lungs tested they said I have asthma, but I never have any problems with that so I don't use my inhaler. I thought he was just wrong..

#7 jefa

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Posted 08 May 2008 - 10:21 PM

Nina, I noticed in your last post you mentioned scleredema twice - not scleroderma. These are two separate things. Is it scleredema your doctor says you may have, or scleroderma. Here is a link to our section on scleredema:

Diseases Similar to Scleroderma
Warm wishes,
Jefa

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

International Scleroderma Network (ISN)

#8 ozzy69

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Posted 09 May 2008 - 02:16 AM

Sorry, he gave me the paperwork on scleroderma, I must have copied and pasted wrong.

Thanks anyway..