Scleroderma Support Group
Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.
Raynaud's?
gastric reflux?
slow swallowing?
huffing and puffing with mild exertion?
puffy fingers?
loss of hair on the limbs? or those hairs becomming exceedingly fine?
neuropathic pain? (numbness, burning, tingling, needle stabs, weird sensations)
red spots on the face or hands that blanch with pressure?
constipation and or diarrhea?
Thank you for your reply. The symptoms my rheumy told me to look out for were those related to Raynaud's or GERD, and also tightening of the skin on hands or feet. I don't have any of these, although I did about a month ago have a few fingers that were turning purple and some developed dark spots (all those symptoms have gone away) . A couple knuckles on my right hand are swollen and definitely larger than normal.
The ones symptom that you listed that I do have is neuropathy in my feet. I'm seeing a chiropractor who specializes in neuropathy and xrays that he took show a compression between two of my discs so I'm being treated for that. Hopefully, in time those symptoms will go away but at this point I don't know.
Since posting my initial question, I've done some research and it sounds like the SCL-70 antibody test isn't as reliable as researchers and doctors had initially thought. I just wonder how many people test positive who never get the disease. Of course, the fact that the normal healthy population wouldn't even be tested for this antibody doesn't help things!
My hurting feet were possibly the very first symptom I ever had. For years I just thought I had "bad feet." It wasn't until the same sort of pain started up in my hands that I recognized that this must be a neuropathy. Then gradually the other signs and symptoms of scleroderma came on.
Be aware of this: the so-called recent "false-negatives" for SCL-70 may just because the internet is allowing people to learn about the antibody. So people are seeking help earlier, at a stage in which not enough signs have developed to make a diagnosis of scleroderma. According to the old ACR criteria, antibodies are not used in the diagnosis, so enough progression must have occurred to make the diagnosis.
On the other hand there is a movement afoot to rehash the diagnostic criteria to take into account such things as antibodies, Raynaud,s and nailfold capillaroscopy in making an earlier diagnosis.
Warm weather often gives remission in early cases of Raynaud's. You may find it returns with cold weather. Have you had nail capillaroscopy done?
If so, nailfold capillaroscopy should definitely be done by someone who knows how to do it. Most rheumatologists never do it. Scleroderma specialists do. But if there's no redness, it'll probably turn out negative. So be aware of whether you're getting any redness or pinkness in that area.
I had just some occasional pinkness adjacent to the cuticle areas and my nailfold capillaroscopy turned out positive.
Now the area between my cuticles and first knuckles has become shiny like porcelain. I think it's the sclerodactyly beginning. But in me the whole disease process is moving VERY slowly.