Posted 31 January 2008 - 05:35 PM
Posted 31 January 2008 - 08:52 PM
Maybe Tangelo would know of a sclero specialist in CO.
There are other tests besides blood work, like lung biopsy or testing other organs that you think may be affected by sclero. A second opinoin also never hurts.
Also check out the page on difficult diagnosis
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 31 January 2008 - 10:17 PM
try to get a second opinion and if that's different than the first one or if it's the same too get a third one. It's all so stresful but it's worth it. Sorry to hear that your doctor haven't been too helpful.
Posted 01 February 2008 - 04:29 AM
Here is a list of the sclero specialists in Colorado. They are listed through the Scleroderma Clinical Trials Consortium. Tangelo might use someone else. I am sure she'll jump in when she sees this.
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)
Posted 01 February 2008 - 11:25 AM
I likely missed your earlier notes...not sure of all you have had done...but this is what they did to me when I was diagnosed...I have recently been diagnosed with Systemic Scleroderma Limited CREST...if it helps you?
My rheumatologist did a physical exam, looked at my skin through a special light of some sort for the Sclerodactyly, checked under my nail beds for the capillaries (apparently ours are all messed up, they loop somehow with this disease, I found a picture somewhere on the web once). They also did an echocardiogram and a pulmonary function test (lungs)....plus the bloodwork. My doctor told me there is no cure but that he could help me with the symptoms and that it was very important that I was monitored regularly by a rheumatologist (if not him, him if he stays but I believe he's relocating out of the area unfortunately).
The bloodwork wasn't enough by itself, I was told some of the other things in CREST also needed to be present which I have, I believe 2 of these things below are enough (calcinosis/Raynauds/Esophagus/Sclerodactyly/Telangiectasia). My ANA was very high and was also in the centromere pattern. My understanding is that <1:40 is the normal range (although I read somewhere <1:60 (?) so anything high should be investigated further (hence, that helped with how I was diagnosed). I also learned that SCl-70 bloodwork apparently points to the diffuse type of scleroderma.
I'm sure the others will be able to help you more....they know tons about this disease and are a great help on this site.
I would also go to another doctor for another opinion... you need to find one you feel comfortable with and that helps you with whatever it is that you might have. I personally would not accept that either. Can you have your doctor refer you to someone else for another opinion? Maybe someone on this site and even give you a good name and you could ask your doctor for that one specifically...good luck and I hope you keep us updated.
Posted 01 February 2008 - 03:00 PM
Posted 01 February 2008 - 03:04 PM
Posted 01 February 2008 - 03:06 PM
Posted 01 February 2008 - 06:54 PM