Question:
>I don’t see why they are still wondering if you have scleroderma.
I missed the beginning post here so forgive me if this is repeating!! Scleroderma is not diagnosed by tests alone!! Sometimes many of us do not test positive for SD with a test called the scl-70 (I think) and others , but yet we have a tremendous amount of SD symptoms and other positive tests. Some of us have an overlapping of disease like I do. I have scleroderma / lupus and RA One disease in time may or may not dominate but to date I test positive for all !! Does it really make a big difference what we test positive for ?? I think we like to know but it really wont change even most treatment options are still the same. It can take quite some time for the medical Drs. to diagnosis us and the stress of wondering what we have can be grossly harmful. If you can just deal with the symptoms you have I personally think this is a good approach!! BTW keeping a journal of your daily symptoms can really help a DR diagnosis you too!!! Well that was my 2 cents for what it is worth LOL 
Regards, socjog > – Hide quoted text — Show quoted text ->I don’t see why they are still wondering if you have scleroderma. IF you have >a >positive ANA, and positive for all the other ones, and raynauds, that should >show something to the doctor. I have raynauds, the T in CREST, and esophogeal >problems. And I’m only 17. But my ANA is negative, and sed rate is normal. So >the tests are saying I don’t have it but the symptoms are there. >Jennifer >Live for today for you have no reassurance that there will be a tomorrow.
Response:
Hello Kathy! I have SD with esophageal problems but unfortunately have not had motility test (wee bit of a chicken). Good luck with your Barium test, let us know how it goes. Susan – Hide quoted text — Show quoted text -WillisWay wrote: > Hello, I have esophageal problems, including dysphagia and GERD, but my > motility test came back normal. They are still doing tests to see if I have > Scleroderma ( I have had positive ANA, RF, and positive lip biopsy for > Sjogrens). I also have raynauds. > Do any of you with a positive Scleroderma dx have esophageal problems, but a > normal motility test? Perhaps I’m just too new to this, and it still may worsen > to the point that a future motity would be positive (not that I’m wishing for > that!). > Next week I’m having a modified barium swallow to help the speech pathologist > know how to treat my dysphagia. > Thanks for your feedback! > Kathy
Response:
I don’t see why they are still wondering if you have scleroderma. IF you have a positive ANA, and positive for all the other ones, and raynauds, that should show something to the doctor. I have raynauds, the T in CREST, and esophogeal problems. And I’m only 17. But my ANA is negative, and sed rate is normal. So the tests are saying I don’t have it but the symptoms are there. Jennifer Live for today for you have no reassurance that there will be a tomorrow.
Response:
Thanks for your reply. I’ll let you all know how it goes! Kathy << Subject: Re: Esophageal Motility From: Susan susa…@home.com Date: Mon, 16 August 1999 01:37 PM EDT Message-id: <37B84FBB.31F8120D@home.com> Hello Kathy! I have SD with esophageal problems but unfortunately have not had motility test (wee bit of a chicken). Good luck with your Barium test, let us know how it goes. Susan – Hide quoted text — Show quoted text -WillisWay wrote: > Hello, I have esophageal problems, including dysphagia and GERD, but my > motility test came back normal. They are still doing tests to see if I have > Scleroderma ( I have had positive ANA, RF, and positive lip biopsy for > Sjogrens). I also have raynauds. > Do any of you with a positive Scleroderma dx have esophageal problems, but a > normal motility test? Perhaps I’m just too new to this, and it still may worsen > to the point that a future motity would be positive (not that I’m wishing for > that!). > Next week I’m having a modified barium swallow to help the speech pathologist > know how to treat my dysphagia. > Thanks for your feedback! > Kathy
>>
Response:
From socjog: – Hide quoted text — Show quoted text ->Scleroderma is not diagnosed by tests alone!! Sometimes many of us do not >test >positive for SD with a test called the scl-70 (I think) and others , but yet >we >have a tremendous amount of SD symptoms and other positive tests. Some of us >have an overlapping of disease like I do. I have scleroderma / lupus and RA >One disease in time may or may not dominate but to date I test positive for >all >!! > Does it really make a big difference what we test positive for ?? I think >we >like to know but it really wont change even most treatment options are still >the same. It can take quite some time for the medical Drs. to diagnosis us >and >the stress of wondering what we have can be grossly harmful. If you can just >deal with the symptoms you have I personally think this is a good approach!! > BTW keeping a journal of your daily symptoms can really help a DR diagnosis >you too!!!
Good points! Scleroderma is treated symptomatically, for the most part. Some people are diagnosed with "undifferentiated connective tissue disease" and "mixed connective tissue disease." These diagnoses may sound less "definitive" than scleroderma, but they are actual diagnoses and are also treated symptomatically. Ronni ~Scleroderma Awareness Is Key to a Cure~ SCLERODERMA FOUNDATION Call 1-800-722-HOPE
Response:
Hello, I have esophageal problems, including dysphagia and GERD, but my motility test came back normal. They are still doing tests to see if I have Scleroderma ( I have had positive ANA, RF, and positive lip biopsy for Sjogrens). I also have raynauds. Do any of you with a positive Scleroderma dx have esophageal problems, but a normal motility test? Perhaps I’m just too new to this, and it still may worsen to the point that a future motity would be positive (not that I’m wishing for that!). Next week I’m having a modified barium swallow to help the speech pathologist know how to treat my dysphagia. Thanks for your feedback! Kathy
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