AboutAmelia Yaussy Expertise I can answer questions about systemic scleroderma and live and internet resources to help you cope with this disease. I have personal experince with scleroderma, osteoarthritis, fibromyalgia, and Sjogren's Syndrome.
Experience I am a systemic scleroderma patient (12 years) and have been active in support online for nearly the same amount of time. I proposed the Usenet newsgroup alt.support.scleroderma and own the website ihavescleroderma.com.
Organizations I am a board member and volunteer for the Scleroderma Foundation, Ohio Chapter.
Publications Arthritis Today, Sept 1997, "A guide to the internet"
Education/Credentials International Webmasters Association, Web Technologies Certification
Awards and Honors Volunteer of the Year, Scleroderma Foundation, 2004; Advocacy Appreciation Award, Scleroderma Foundation, 2005
Question QUESTION: Hi, I haven't been diagnosed with anything yet, but it seems I have a lot of the symptoms for the last 7 months, had muscle cramping ,nerve burning hands/feet, puffy sore hands/feet, dry eyes/mouth ,thickness in hands,sore elbows and so on. The Dr's have done a lot of blood work in the beginning including Scl-70 ANA etc, but nothing is showing up. Is this common with scleroderma especially in the beginning because they don't want to test anymore even though it's been 6 months and I'm sure results can change. One Dr told me Sjogrens usually wont show in bloodwork and to get a lip biopsy.
Also they are telling me I don't have it because I don't have raynouds- but again, I'm seeing that some people only have that after having the disease for a while and the skin has been damaged on their hands and then it occurs. And I've seen different answers to what it is, everything from numb cold feelings and others say, no you have to show color changes to have it. My hands and feet have always been cold sensitive, but don't turn color. I'm getting very concerned because now I have this feeling of stiffness in my face,arms,and legs where I have to stretch everything, but the Dr's are not seeing it , so they don't belive it. I live in the Atlanta area and so far I haven't found a Dr who has a lot of knowledge about this . Thank you for any information you can give.
ANSWER: Only about 2-4% of people with systemic scleroderma don't have Raynaud's, but it does happen, and scleroderma shouldn't be ruled out solely based on that. Raynaud's definitely is color changes in the hands, feet, nose, and ears, and numbness, tingling, and sometimes pain during an attack. There are hand and feet photos of an attack here: http://www.dermnet.org.nz/immune/raynaud.html And, it's usually one of the first symptoms. Often, people with diffuse scleroderma have a short time between the first Raynaud's attack and skin tightening, while people with limited scleroderma can have years between first Raynaud's and skin tightening.
ANAs are not a basis for diagnosis. They're used to bolster a diagnosis based on symptoms, history, and things the doc can see on examination. Some folks with diffuse scleroderma do not have positive SCL-70 ANAs - me for one. I even know of someone with both SCL-70 (specific to diffuse scleroderma) and anti-centromere (specific to limited scleroderma) ANA results. They just can't be trusted! ;-)
The Scleroderma Foundation has a listing of research and treatment centers in the US here: http://www.scleroderma.org/medical/centers.shtm Atlanta isn't on it, but that doesn't mean there's no one who specializes in scleroderma in Atlanta. Rheumatologists treat patients with scleroderma, and often know who in the area is more experienced with the disease. You may also have more luck in a university medical center's rheumatology or internal medicine dept.
Some of us have spent time in the "undifferentiated connective tissue disease" column for months or even years before a more specific diagnosis is made. There are strong reasons to get diagnosed as early as possible, like new medications that are helping control dangerous complications as long as they are recognized early. It's certainly easier to diagnose a scleroderma renal crisis, for instance, if you know the patient has scleroderma. And the specific treatment, ACE inhibitors, is highly effective. But scleroderma is not a co-operative disease and varies widely from person to person, making it difficult to pin down.
Keep reading, keep working with your doc - don't close your mind to other possibilities, and don't let his mind close, either. I hope you get an answer soon.
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QUESTION: Thanks for the information, I looked at the Raynauds website you sent. In general, does Raynaunds happen before hand swelling and other symptoms with diffuse scleroderma, or is it mostly before tightening starts ? Also, just wondering if your Sjogrens show up in your blood tests , I don't know if I get the biopsy and it's positive , if that will affect my health insurace... I'm guessing yes :(
I think that I am going to have to find a university setting out of Atlanta to get answers. Emory , here in Atl, has one Dr but she deals with children and scleroderma, so that isn't what I'm looking for. With all the people you have talked with, is there a center and a Dr you would highly recommend ? I don't mind to travel , I just want someone who has seen many cases of it, and has some common sense :) Thanks again for your advice
Answer In my case, reflux was first, then Raynaud's. Raynaud's was in Nov, followed by swelling and contracture in my hands in the following April. My Sjogren's was diagnosed way later, basically by symptoms.
There are so many good, major scleroderma docs. I have a local rheumy and I go to UT-Houston once a year, but check out the centers on the site I listed. They are all amazing scientists and people.
