Onset and progression of disease
Posted 23 March 2008 - 06:49 PM
Posted 24 March 2008 - 01:33 AM
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)
Posted 24 March 2008 - 02:19 AM
Scleroderma varies from one person to the next, so it is difficult to predict how it will advance. Do you see a rheumatologist/scleroderma specialist in addition to your primary care physician? If not, it would probably be a good idea and they would be able to help you with your questions regarding on set and progression.
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 24 March 2008 - 05:49 AM
Although for me I had Raynaud's all my life and no one thought twice about it since my Mother's fingers tended to turn white once in a while but as she aged it went away, we're still not sure if it was the same thing because she doesn't experience any other things that I do. At 12 I developed ulcers though they would heal quickly on their own, and then at 19 I got my first calcinosis lump with more followed over the years around the time I also developed a lowgrade fever and fatigue, just thought it was stress. And finally at 21 I started noticing Telangiectasia. Now almost 23 a little bit of Sclerodactyly on my fingers. I've also always had morning swelling of my hands and feet and face, always thought it was due to drinking too many fluids at night. who knew!
But I think since it's so different for everyone just keep a close watch to any changes you see in your body or how you feel. And definitely tell your doctor everything. Since I just recently started seeing a reumatologist he is planning on doing tests every three months this year along with a full exam just to see how things are progressing, then I will go to once a year.
Posted 24 March 2008 - 06:16 AM
Unfortunately, there isn't a clear cut answer for your question. This is a highly variable disease, and there isn't a way to pinpoint a lot of the questions we all have. The key is listening to your body, reporting everything to your doctor and working with the treatment plan they have for you.
Posted 24 March 2008 - 12:04 PM
Mine started off a little bit differently, I first noticed about 12 months ago that I had a sore ankle and achilles tendon pain/stiffness especially first thing in the morning. I had an ankle xray which was normal and then a blood test which showed a high ANA -1600, from there referred to a rheumatologist.
From then on I noticed almost immediately, 2 slightly swollen fingers, Tachycardia, fatigue, raynauds- mainly in the feet, pain in the lungs and breathing problems. Reflux also comes and goes, swollen ankles and feet, and now my Pulmonary Function Test has revealed a decrease at a steadily rate in the DLCO, which may mean Pulmonary Hypertension or Interstitial Lung disease.
I have no skin involvement as yet but have experience the sensation of tightening in both wrists and the face area.
As you can see no two people are the same with this disease, I find strangely enough though that I didn;t experience raynauds until after I was diagnosed.
I also have a positive anti-centromere pattern which suggests Limited Scleroderma/Crest. I also may be developing ulcers on my hand and feet.
I hope this helps with your questions.