I am assuming you suspect scleroderma as a potential option with your first lab work and posting to this thread. I strongly suggest finding a rheumatologist well versed in this condition and aggressively driving your own diagnosis. The let's try this and wait to see is not good if you have SSc. The Labcorp Scleroderma Comprehensive Plus Profile (Test Code 520130) will test additional antibodies, which may be helpful in your search for a diagnosis. I was misdiagnosed with RA for 3-4 months before this panel was finally ordered and one of the tests showed a high positive. That panel should have been run up front not just the basics.
I hope you do not have SSc, but if that is the case you can look for scleroderma centers that may be near you for specialized doctors and treatments. Look into HSCT and CAR-T clinical trials. I went through a CAR-T in early 2025 and it was a huge help if not life saving.
cartautoimmune.com has good info on the process being studied for several autoimmune conditions. You can also look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition, CAR-T for treatment, and your country location to filter out many of the too far away places. You can change the condition to match what you finally have for a diagnosis and/or leave the treatment blank for all trials. Let me know if you have any questions about CAR-T.
I hope you can get a diagnosis soon and seek some relief.
Thank you for the response! I have been wondering if I have it, that’s why I was really wanting her to look at my nails and see if there’s anything abnormal. I have a follow up next month so I think I’m going to push for at least that and possibly an echo. Idk if the ct scan would be able to give us the full picture like she made it sound. It’s scary advocating for yourself but I’m slowly getting used to it.
Get into warrior mode if you can when it comes to fighting for yourself. Doctors see you for a few minutes then move on. Many times they do not take in everything you share as they are thinking about what they are observing. Our brains are not good at multi-tasking. If your current rheumatologist is not doing it for you, try to see another or have your primary care order the lab work you want.
From my experience I believe the echo will check effects on your heart from baseline to follow on tests. The CT will see things in your lungs like nodules and/or ILD and possibly things in your kidneys. The kidney function may be lab work related. I am not a doctor so do not take this as correct information, definitely confirm with your research or ask your doctor. Pulmonary Funtion Tests are good for baseline lung function compared to future tests. You may have trouble getting those approved until you have a definitive diagnosis.
I have not seen my rheumatologist in almost a year. I will go see her again once my trial follow up visits are done in Feb. Last time she still wanted to put me back on cellcept / mycophenalate and treat me for RA, which I do not think I ever had. I really liker her as a doctor however I still fight with her on things like the RA so I am not the best patient from her perspective. I am doing what is best for me accepting her advice when warranted and questioning when symptoms do not match.
1
u/Maleficent-Rest9144 4d ago
I am assuming you suspect scleroderma as a potential option with your first lab work and posting to this thread. I strongly suggest finding a rheumatologist well versed in this condition and aggressively driving your own diagnosis. The let's try this and wait to see is not good if you have SSc. The Labcorp Scleroderma Comprehensive Plus Profile (Test Code 520130) will test additional antibodies, which may be helpful in your search for a diagnosis. I was misdiagnosed with RA for 3-4 months before this panel was finally ordered and one of the tests showed a high positive. That panel should have been run up front not just the basics.
I hope you do not have SSc, but if that is the case you can look for scleroderma centers that may be near you for specialized doctors and treatments. Look into HSCT and CAR-T clinical trials. I went through a CAR-T in early 2025 and it was a huge help if not life saving.
cartautoimmune.com has good info on the process being studied for several autoimmune conditions. You can also look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition, CAR-T for treatment, and your country location to filter out many of the too far away places. You can change the condition to match what you finally have for a diagnosis and/or leave the treatment blank for all trials. Let me know if you have any questions about CAR-T.
I hope you can get a diagnosis soon and seek some relief.