Posted 14 December 2008 - 09:25 AM
Not sure where to begin. I apologize in advance if I don't use the proper terms, etc. Last year I tested positive for Sclero markers after the onset of Raynaud's. I was referred to a rheumatologist and he ran additional tests (x-ray, breathing tests, etc), and everything looked great with no further symptoms. However, he still wants me to follow-up with him on an annual basis to keep an eye on things. I just saw him about a month ago and things still looked good.
However, since then (over the last few weeks), I have started to develop aching legs, hips and new pains in my lower legs (mostly front and back of calves). My lower back is also really aching. Not sure if this has anything to do with the potential Sclero, or just old age setting in I was hoping for your thoughts - is this something I need to call him about. Could these new pains be an onset of the first symptoms, or are they probably unrelated?
Thanks and have a great Sunday!
Posted 14 December 2008 - 11:51 AM
Posted 14 December 2008 - 12:12 PM
Welcome to this wonderful forum!
Sorry you've been having pain for a few weeks in different places. It is possible that the pain is sclero related, it does cause pain in joints, hands, feets, back etc. Having said that it could be totally unrelated. The difficulty with where you are is that until sclero declares itself it's easy to think every ache/pain is it. Ring you rheumatologist for their considered opinion as if it is sclero the sooner treated the better.
What is in your favour is no internal involvement to date, you already have a rheumatologist on hand and now you have this forum where you can ask what you need when you need.
Let us know what happens and take care.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 14 December 2008 - 12:33 PM
You have come to the right place to learn about sclero. If you mean positive ANA by sclero markers, then I think we are in a similar situation.
I tested positive for the scl-70 which is a highly specific test for diffuse scleroderma. However, I have not been diagnosed because I don't fulfill the criteria for any kind of scleroderma. I only have acid reflux, muscle pain and other few symptoms that according to my doctor might not be related to sclero at all. I am 29 so aging wouldn't be the cause. She is not concerned though, as my organs looked fine like yours. I see her every 3 months.
I have been feeling very fatigued lately but it is really hard to know if it's sclero related. My doctor tells me if I had full on active disease I would know it right away.
I know it sounds hard and I am having a hard time with this myself, but you need to put the concerns about sclero in the back seat and continue living your life. Always checking with your doctor of course and being aware of new symptoms but without letting fear rule your day to day (easier said than done).
Do you know what was the name of the specific test you tested positive for? I know CREST could have a really slow onset, sometimes decades, while diffuse tends be faster.
Good luck and I hope you enjoy good health for many many more years.
Posted 15 December 2008 - 03:53 AM
I hope those things aren't sclero related.
I hope you stay warm today. It is definitely cold in Wisconsin today!!
I had to stop and get gas this morning and take tests across campus for final exams. I made sure to wear a camisole, long sleeve shirt, I have one cashmere sweater and that is on today, wool socks, a hat with the hood pulled up, scarf wrapped around my head so only my eyes peeked out. I managed to make it by adding another sweater before hiking across campus. My major ski gloves are on the radiator so when I have to go across campus again for afternoon final exams, they will be toasty.
Mando, also in Wisconsin.
Posted 16 December 2008 - 11:42 AM
And welcome to the Sclero Forums. It really is hard to say if these new symptoms you are having is Sclero related. Have you checked in with your doctor yet?
Posted 16 December 2008 - 06:04 PM
Welcome Lisa. Sorry you are not feeling well. I agree with Sweet. Maybe you should call your doctor and let him know what is going on. There is always a reason for pain and if it lingers and is bothersome we should get it checked out. It could be a number of things.
With gentle thoughts,