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Did you know that exercise increases inflammation in systemic sclerosis?


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#1 dana

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Posted 09 April 2007 - 03:03 PM

Hi I just joined here today. Just one quick ? if you have a negative ana blood test, does that meen for sure you don't have systemic scleroderma or is that just one test. I've also had a skin biopsy that said I have morphea, and I'm on methotrexate stomach meds for gerd, and three different steroid creams, and 2 inhalers for asthma. One other thing is I've had 3 sympathectomies done on both legs and left arm when I was younger.
Any way with all these things going on I don't know what to think, but I do know somethings going on thats not right and I need to know. If anyone can give me some idea I'd really apprietiate it.
I hope you can understand what I've wrote I'm horrible at writing.

#2 Shelley Ensz

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Posted 09 April 2007 - 04:18 PM

Hi Dana,

Welcome to Sclero Forums, I am glad you joined us. It is possible to have scleroderma without a positive ANA. It would probably be very important for you to be seen by a scleroderma expert, in order to attain the proper diagnosis and treatment. Most rheumatologists have little or no experience with scleroderma, so the diagnosis is very frequently overlooked.


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Heidi

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Posted 10 April 2007 - 01:26 AM

Hi Dana,

Welcome to the forums! I am glad you found us, but sorry it is because of all your symptoms. As Shelley told you, yes you can have systemic scleroderma without a positive ANA. Many rheumatologist will base their diagnosis on a pattern of symptoms and not look only at the blood work. I agree with Shelley in that it would e a good idea for you to see a rheumatologist and, if possible, one who specializes in scleroderma.

In case you are just starting on your journey in learning about scleroderma, we have lots of great information on our Sclero A to Z web page. You might even want to check out the pictures of Morphea to see if it compares to what you have. A word of caution, however. Please don't read so much that you scare yourself into thinking you are going to get every symptom described. Everyone is so different with this disease and no one can predict how the disease will or won't progress in any given individual.

Again, welcome! Please do keep us posted on what you find out.

Warm wishes,
Heidi

#4 TJ903

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Posted 10 April 2007 - 04:59 AM

Dana,

Welcome and sorry and the same time. We all arrived here as you, loaded with questions and seeking answers. This place is a life saver for me, I was one of the people that lept onto the internet to get info and all I got was scared! Please don't do that, but if you do, remember that sclero is a very unique condition and because you are a very unique individual you may or may not follow the never typical progression. Does that make sense?

I was diagnosed in Jan '07 with diffuse sclero went online and got very depressed, but I ound this website and found hope!

Good Luck to you- TJ903

#5 janey

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Posted 10 April 2007 - 10:38 AM

Dana,
Welcome Darlin'. You have definitely found the right place for information and support. I'm sorry you're here due to your health problems, but I'm glad you did find us. As Shelley and Heidi said - it is possible to have scleroderma with a negative ANA. It's also possible to have a positive ANA and not have an autoimmune disease. These antibodies tests are guidelines, not solid diagnostic tools. I definitely have systemic scleroderma, but my scleroderma markers are negative, so go figure.

I hope you're seeing a good rheumatologist if not a specialist. That is so important! Hope to hear from you often. So glad you're here.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#6 Sweet

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Posted 11 April 2007 - 01:37 PM

Hi Dana,

Welcome to the sclero forums. You will find a lot of information, support and friendship here. I look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 CarriePan

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Posted 12 April 2007 - 02:31 AM

Hi everyone! Well, I finally had time to sit and write since joining in Dec. I've had Raynaud's since 1996 and never knew what it was. Two years ago I finally went to a specialist and he said my ANA was positive and was checking for Lupus. That was negative but never gave me another diagnosis. Last August we moved and I had to find a new primary care physician. When she got my blood work back, she suggested I see a rheumatologist dr because there were some abnormalities. I did. She had just come back from a conference on Scleroderma. I hear most doctors are very careful about diagnosing scleroderma. This doctor picked it up right away. I have limited systemic sclerosis with CREST, now checking for Sjogrens too. Scary sounding isn't it? Skin tightening, swollen fingers, reflux, chest pain, sometimes laboring breathing, stomach pain, pain swallowing and felt like a lump in my throat, itchy skin, dark patches on the lower legs with bumps under the skin that hurt like crazy...list goes on. After having a pulmonary lung function test, ekg, chest x-ray, and colonoscopy nothing was abnornal. YAY! Then to the endoscopy. I have GERD, erosion at the bottom of my esophagus, a hiatal hernia and polyps in my stomach. Polyps??? How do you get those?? So I had an upper abdominal ultrasound. Everything there was ok too. So why do I feel terrible most of the time? Sometimes I feel like I'm making up symptoms. I know I'm not LOL I read some of your stories and I know it could be a lot worse, but for me it's annoying to say the least. I'm glad there is some place to vent LOL B)
Carrie
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