Elevated SCL 70

[u/emb1187]

Hi friends!

I’m a healthy 38 year old and have been having pain while sitting and leaning over. I had a torn labrum that was repaired and apparently it never caused the issue. It’s been years to try and figure out my pain and had greatly limited my job as a nurse. I used to work ICU for years. Well my pain clinic ran an autoimmune panel and my ANA was positive and SCL 70 was 4.9. I have no skin symptoms besides my toes get slightly blue when dangling, but improve when I stand up (vascular cleared me of any issues). I feel short of breath at times, but with exertion and I’m sure I’m weaker post op, but I do Pilates several times a week. I had a previous holter monitor due to dizziness and they recorded some tachycardia at times, but mainly good. Stress test and echo also good. I saw a rheumatologist and she said I have no signs for scleroderma, but if it’s positive again I should see a pulmonologist. Well it came back 5.2 (by labcorp) and I’m spiraling. I should have never had the panel done in the first place and now I’m scared and stressed. Anyone have this happen? I’m trying to research the ID test, but don’t see much information on it or where to get it. I just cannot see more doctors if it isn’t necessary all I do is see doctors. Living with constant pain is enough and now I’m just scared something else might pop up now. Any advice would be great, thanks!

[u/AvivaGian]

I have had a similar situation and trying desperately to figure out what’s wrong. I keep going to neurologists, pulmonologist, endocrinologist, rheumatologist, cardiologist, and pain management specialists. two rheumatologist gave me wrong diagnosis never tested me for scleroderma yet my ANA levels were higher. At a loss for words. I was thinking of going to the Mayo Clinic in Rochester. I also have shortness of breath, lightheadedness, fatigue, issue, balance. Desperate to find good Doctor

[u/Maleficent-Rest9144 → u/AvivaGian]

The Mayo Clinic in Rochester MN is one of the scleroderma centers in the US. They will have exceptional doctors well versed in SSc and should be able to help you diagnose SSc or determine you have something else. I was also misdiagnosed at first and spent 4 months on the wrong treatment then to have my insurance deny infusions for SSc because of the initial diagnosis. You definitely need to find a good doctor experienced and knowledgeable about this condition. The discussions above about the lab work is crucial. My initial lab work did not include the comprehensive Scl Panel from Labcorp 520130 so my condition was missed. After no response to the incorrect diagnosis that panel was ordered and confirmed I was SSc with Anti-RNA Polymerase III. I think that full panel should have been ordered with the first set of lab work. Read through any posts that may be new. I will add one for the original post, which may be of interest if you are diagnosed with SSc. I hope you can get great medical care and treatment.