Newly diagnosed

[Edwards02]

HI there! I was recently diagnosed with sclerderma. I had some blood tests done twice to double check and I have high autoantibodies for scl-70, systemic sclerderma. We were trying to figure out what was wrong because since 2008 I have had numbness,tingling, positive ana, loss of mobility, fluid build up to where I need it drained, extreme fatigue, raynauds etc..the list is long. They thought that I might have lupus as that is whT my grandma died from. Negative for lupus and mixed connective tissue disease. I guess i am confused and really scared. I dont have thickening skin, I get the raynauds and malar rash. Is there always thickening skin? It feels surreal. I see a naturopath who is amazing but she did not say we needed to check organs or anything like that. I dont really now what to do with this diagnosis.

[LucyJean]

Hi there, sorry to hear you have been having such a difficult time, and that it has taken a long time to get a diagnosis. The Scl-70 antibody is usually associated with Diffuse systemic sclerosis, but everyone is different in the pattern of symptoms that they exhibit so don't get to hooked up on this. People vary in the severity of their condition and how affected they are by the 'typical' pattern of symptoms that you might expect from the condition. Not everyone has extensive skin involvement, not everyone has organ involvement, not everyone has digestive issues...you just need to look at what you are presenting with. Don't spend a lot of time browsing the internet. If you want information look at reputable websites like Scleroderma and Raynaud's UK or the Scleroderma foundation.

I am assuming you have been diagnosed by a consultant Rheumatologist? Do they have a team of specialist practitioners who you can talk to about your diagnosis to get more information? The SRUK site also has a helpline that you can call. There may be a support group in your area?

I am not sure if you live in the UK or elsewhere?

Hope that helps

All my best

Lucy x

[Edwards02 in reply to LucyJean]

Thank you for your response! I do not see a rheumatologist anymore. I use to before, but they had me on a whole slew of meds, methotrexate, hydroxychloroquine, prednisone...all to combat my symptoms I guess but it made me so sick. That was before I was even diagnosed, they just knew something was wrong. I switched to a naturopath and lived the care I recieve so stuck with her. I was starting to experience more sy m otlms so she did more blood work and so here I am. Maybe I should switch back to a rheumy? Thank you for showimg me so.e reputable sites! Its good to here that everyone presents so different. I live in the states, I'm sure there are some groups! Thanks again!

[Hidden in reply to Edwards02]

I am in Wa state. I see a rheumatologist, pulmonologist and naturopath. I always question my Mds in my meds and challenge them to find me ones that have the lowest side effects and the lowest dosages. I work with my ND to support my MDs with supplements and diet to keep me feeling as good as possible. I still have really bad fingers but the meds keep it from getting worse. You have to know what your particular symptoms are and the best way to keep them at bay. For instance I hate taking sildenafil for pulmonary hypertension but mine is currently very mild so I take the meds to keep it from getting worse because if it does it won’t get better. So you have to decide if side effects outweigh the possibility of disease progression. My ND gets that and tries to support me anyway possible. Hope that helps but I would definitely recommend at least talking to a rheumatologist about new symptoms to make sure you aren’t missing anything major

[Edwards02 in reply to Hidden]

Thank you for the reply! This is all extremely helpful for me! I currently don't have any symptoms beside really bad muscle weakness and fatigue, thats what i have been going to nd to help with and then she tells me I have sclerederma based on my labs. Looking back on the past 13 years and all my symptoms though it probably makes sense. It just seems unreal. Anyway thank you so much, I will definitely be looking for a rheumatologist!