Finding a sclero expert?
Posted 10 May 2008 - 04:31 AM
I have had 4 different diagnoses over the years and one said, you need to go to Duke. This was after my 2 manometries.
I'm glad a nurse practitioner finally diagnosed it. I had one diagnosis of primary raynauds, one diagnosis of UCTD, one of cREsT and one of I don't know what you have. They all pulled at the skin of my hands to say I didn't have sclero. What is wrong with these doctors that they don't keep themselves informed?
Anyway, this is a great forum. I don't know why I waited so long to 'speak'. Thank you for all the kind feelings and responses...to all of us.
Oh yes, will my ANA keep going up and does it tell them anything? Does it mean stuff is going on inside...organs, joints?
Thanks again. Sorry for the 2 questions in one post.
Posted 10 May 2008 - 04:59 AM
Yes, here is the link to our list of Scleroderma Experts. It is also linked on the right-hand side of every forums page, right above where we list the Sclero Forums team of support specialists.
Don't sit around and wait for your local medical team to put it all together. By vast margins, they usually don't have a single clue when it comes to scleroderma diagnosis or treatment.
Founder and President
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.
Posted 10 May 2008 - 09:43 AM
My family doctor told me that the ANA test is the most unreliable because it can read false which is why they need to rely on other symptoms to diagnose diseases as well (that blood test by itself is not enough to diagnose scleroderma).
I'm not sure what type of ANA you were tested for but my understanding is that the centromere pattern points to System Scleroderma Limited/CREST and the SC1-70 points to Systemic Scleroderma Diffuse. Different patterns can refer to different diseases as far as I know. I read that the normal range for ANA is 1:40, although some say it is 1:60...so anything higher than that should likely be investigated further to see what's going on (ie, autoimmune problem maybe or whatever?).
I could be wrong, but I don't think the ANA itself has anything to do with the internal involvement or joint problems...I think it just points to the type of disease?? I know that I was told there was no need to run that ANA test again on me...even if it changes, because it in itself is not 100% factual anyway. The other symptoms are the pieces really, that's when the puzzle fits (so to speak).
Hope that helps?
Posted 10 May 2008 - 02:39 PM
There are more tests than the auto-centromere and ANA. There is a panel of tests that look for specific autoantibodies for these diseases. There are antibodies for scleroderma, Sjogren's, Lupus, etc. that the test may indicate.
Posted 11 May 2008 - 07:56 AM
Anyway as far as I can tell I have between no and very few skin symptoms. However that does not seem to prevent me from having Calcinosis, Raynaud's, reduced lung function, dysmotility, joint involvement and muscle involvement. My doctor said it can take from 5 to 10 years for the skin to become involved in LSSc.
My sister has MS and the National MS Society has a set of treatment recommendations. She finds this a very helpfully resource when choosing between her doctors various recommendations. I referred to the NIH Consensus report for the treatment of hyperparathyroidism when deciding between different doctors recommendations on what I should do for this.
We need an effort by the leaders in this field come up with similar guidelines. Too many doctors know nothing about this disease and have no idea how to diagnosis or treat it.
Posted 18 May 2008 - 01:33 AM
I know a few doctors who are specialists in Scleroderma. They are mainly Rheumatologists. If you have read about my articles, you will know that they are in London. If you live in London or anywhere else in the UK, you can ask you doctor to refer you to the Royal Free Hospital in London which is the only hospital in England and Whales that specialises in Scleroderma. Patients all over England and Whales go there and at times have to stay overnight for the numerous tests that are involved before coming to a final diagnosis. Otherwise, I am sorry if you do not live in the Uk and hope that somebody will manage to help you in your search.
Posted 18 May 2008 - 12:35 PM
I think your ANA can go up or down. Mine has done both. I think it's just an indicator that you have autoimmune problems. I love Johns Hopkins. I don't go to the Scleroderma center, I just go to the Rheumatology department.