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Old 10-31-2007, 02:43 AM   #1
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Join Date: Sep 2007
Location: Massachusetts
Posts: 26
desparado13 HB User
scleroderma

Hi I've actually posted on lymphoma and sarcoidosis. And my questions are actually about scleroderma. I know that seems strange but it will make sense. I had a lymph node biopsy done recently because I had swollen lymph nodes that were very firm and painless. Anyway, the results showed that it was dense fibrous scar tissue. So now I feel firmly this is scleroderma given my other symptoms: fatigue, chest pain/tightness, upper back pain, occasional joint pain (knees, elbows, hips), hand and leg swelling, headaches, GERD, dry mouth/throat and dry eyes, shortness of breath, heart palpatations, rayneouds phenomenon, high blood pressue( usually its around 150/90, and I am only 24), frequent urination(not sure its related), fibrocystic breast tissue( my breasts are so lumpy, that's why I was so worried I had cancer at first), and on a chest ct a cyst showed on my liver, but the rest of the ct was normal. And I have a suceptibility to getting chronic infections (now I know its probably because I was overworking myself). I have had so many blood tests checking for other things but everythins always comes back fine. Tests like Lyme, ANA, reumatoid factor, ESR, CBC, hep., HIV, TSH, diabetes and other things I think. And tests like chest x-ray, chest ct, EKG, ECHO, holter monitor, heart MRI, stress test. Most of the cardiac testing was done three years ago though so I'm wondering if I should do it again. But the only thing is that i have no type of skin hardening. I do have tight feeling skin, which I thought was maybe caused from dryness. I do have this everywhere though so I don't know what to make of it. It is such a sutle symptom. And I did read somewhere that it doesn't always manifest itself in the skin or it just takes awhile and isn't as severe. And given my symptoms and the lymph node biopsy results it just all makes sense now. So I am just wondering if anyone out there has had any of these similar symptoms. And also just anyone in general with the systemic type of scleroderma. Thanks Lisa

 
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Old 11-06-2007, 06:38 PM   #2
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Join Date: Nov 2007
Location: Michigan, USA
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autowoman HB User
Re: scleroderma

I wanted to encourage you to keep pursuing. You know your own body and when things are not right. For the past nine months I have been on a liquid diet because of swallowing problems. I did find out that I have Hashimoto's thyroiditis. I had surgery on the thyroid which seemed to get things under control - as far as the thyroid goes. The other problem was I still have swallowing problems and something systematic was definitely going on. So I had to keep pursuing. It seems to have paid off because I have a really great rheumatologist who is really concerned and wants to be aggressive with diagnosing me. She believes that I have CREST limited scleroderma. My ANA shows positive but with low numbers. But on my own research I found out that it doesn't always show in ANA. There are other tests for scleroderma. One is Anticentomere antibody- ACA. I am going to ask my doctor to do this test tomorrow. One test she wants me to do is a pulmonary function test - this is for pulmonary hypertension. A serious affect of scleroderma to the lungs. The other thing she told me is that they don't just look at the blood tests and say "yes or no" to a disease. She said they have to look at the whole picture. Tests and symptoms. My ESR tests has been real low through this whole thing. But... now my CRP is elevated. CRP is C-reactive protein. (in case you wanted to look it up- I did)
As far as my symptoms go - well the list could go on and on. with that being said - the most significant ones that my doctor was paying attention to for scleroderma was- of course the swallowing problems (esophagus) Raynauds, the little red spots(called telenfectasia) the joint pain without swelling, every joint in my body, Muscle pain and spasms, and the unexplained low grade fevers. Again it is the whole picture that she is looking at, because the blood test alone (the ANA & ESR ) was not showing anything. Do your research and bring it with you to your visits and ask your doctor to check into whatever you may suspect. You may not be right, but at least he or she will see your perseverance in wanting to get better. That is what I did. Oh yeah, I don't have the skin hardening (yet) She is monitoring my fingers because she thinks it's likely. Stand strong and keep pursuing with research and the doctors.
Hope to hear soon that you have some answers. Good luck

 
Old 11-06-2007, 09:19 PM   #3
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ErinS64 HB User
Re: scleroderma

I was diagnosed with SLE about 1 1/2 years ago officially. Prior to that I was in the UMCTD area. I was diagnosed with diffuse systemic sclerosis (diffuse scleroderma about a month ago. I have the skin manifestations on my face, arms abdomen and legs and recently it has started in my neck and chest. I had no clue what it was. I had pitting edema in my ankles but that was due to my kidney problems from my SLE. I had pulmanary fibrosis, but again we put it up to my smoking and asthma. I have swelling of my hands and fingers but we thought again, kidneys. What I expected it to look like is not what it looks like. I look very swollen and there is definate thickening. This is the first stage though. You go through the swelling and thickening first and then it hardens. I was diagnosed by the dermatologist through a skin biopsy and then more blood work. I do have mitral valve regurgitation. This was found a little less than a year ago. Ironically, the hallmark of the disease and the area usually effected first is your hands and face. While my face is definately being effected my hands have not been hit so hard yet. I actually went to my GP and had him check my thyroid 2 times in just a hope that this is all some kind of mistake and my thyroid is just messed up and underactive and that is why I am swelling up like a blowfish. Oddly, my left arm and leg are worse than my right and my right side of my face is worse than my left. LOL>..I am just now hoping to even out. I have GERD pretty bad as well.

In my reading - which to be honest I wish I hadn't done now because this stuff is pretty scary, I did read about a type that effects only your internal organs and not your skin, but it is still being debated called sine sclerosis or something like that. Believe me when I say, that once it effects your skin, you absolutely know. It isnt as much as it tightening up as it is you are thickening up so much you cant even squeeze your skin. It is like it has adhered to your muscles. It burns because it is so tight. I am not even able to bend my left arm completely much less straighten it. And as I said earlier, my skin manifestation have only been going on for a short time now, we are talking only may 5-6 months tops.

I would see a good dermi. Mine is at UT Southwestern which is a leading medical university.

I wish you luck and pray very hard that is isnt ssc...

Erin
Dallas TX

Last edited by ErinS64; 11-06-2007 at 09:22 PM.

 
Old 11-08-2007, 07:50 PM   #4
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Join Date: Sep 2007
Location: Massachusetts
Posts: 26
desparado13 HB User
Re: scleroderma

well thanks guys for your input. It helps me feel better. I plan on seeing my PCP soon and bringing everything to her attention. And maybe see a specialitst. I know something is definetly not right but it sucks cause I can't get a definitive answer. My family just thinks I'm overreacting. I have no support. Except online so this makes me feel alot better.

 
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