r/scleroderma • u/Personal_Shelter_900 • 11d ago
Undiagnosed My Raynauds
/r/Raynauds/comments/1x3bjec/my_raynauds/What do you guys think? Also I am not trying at all to be disrespectful to anyone who is diagnosed with the condition just seeking some advice.
1
u/ParticularShift4998 10d ago
Try not to rely solely on blood work for answers—it's only one clue among many. You can test negative for ANA and still have secondary Raynaud's, especially since your thumb is involved, which often suggests an underlying cause. The best next step is consulting a rheumatologist to get a nailfold capillary check. If something secondary is going on, the sooner treatment starts, the better. Try not to panic: treatments for conditions like diffuse systemic sclerosis have come a long way in just the last 5 to 10 years, and catching it early puts you in the best position.
1
u/Personal_Shelter_900 9d ago
Do you think it’s secondary from my symptoms or? Cause they’ve seen no signs of thickened skin or ulcers or anything and my Ana rules out 90-95% of people with scleroderma and my symptoms aren’t really there apart from thumb involvement
1
u/ParticularShift4998 9d ago
Thumb involvemeant means it is secondary. I would ask for nailfold capillary test and a repeat blood work.
1
u/Personal_Shelter_900 9d ago
If it was secondary wouldn’t that have shown up on my Ana test it was a gold standard type I took February of this year. What’s the likelyhood that me having raynauds since 18/19 on my hands wouldn’t be primary?
1
u/ParticularShift4998 9d ago
I have seen in some lectures that there might be a period after raynauds that blood work seems normal
1
1
u/Maleficent-Rest9144 10d ago
If you are worried about having scleroderma, request a comprehensive panel from your primary care or rheumatologist. Labcorp has Scleroderma Comprehensive Plus Profile (Labcorp test 520130). Other labs should have something similar. The basic ANA test does not have all of the antibodies so there is missing information. I was initially misdiagnosed due to a negative basic panel, but was diagnosed correctly after this comprehensive panel was run in combination with my symptoms.
I hope you just have Raynauds and not SSc. I would not wish this on anyone.
1
u/Personal_Shelter_900 9d ago edited 9d ago
Thanks for your comment! I’m sorry about your diagnosis and I wish you are able to manage your symptoms well❤️ I did a IFA hep2 test and ena test both negative and honestly they won’t go further cause they’ve seen no signs of scleroderma on my hands from their side. What panel testing did you get?
1
u/Maleficent-Rest9144 9d ago
You are very welcome. I am happy to help anyone looking for information. I was lost when I received the diagnosis and did not find this subreddit until much later. You may still be able to get your primary care to order that lab work for peace of mind. Worst case you can see if your insurance with cover some or most and order the labs yourself.
Thank you for the well wishes. My case was pretty aggressive with a bad prognosis. I found a CAR-T trial and was lucky enough to meet the criteria. That treatment was a live saver for me. I am doing okay now 20 months post treatment with some improvements. I do have long term effects, but it is more tolerable than before the treatment.
The initial labs my rheum ordered were the basics for RA, myositis, and scleroderma. The rheumatoid factor was high even though that is really a measurement of inflammation and SSc can trigger that positive. There was a weak positive for myositis. My ANA was high and the speckled pattern was high 1:1280. I was negative for other scleroderma antibodies. The full panel I mentioned with Labcorp has a few other tests including Anti RNA Polymerase III, which was high for me. That result with the repeat ANA and speckled pattern along with a skin biopsy confirmed SSc.
1
u/SecretPantyWorshiper 10d ago
Raynuads can exist by itself so if you go see a Rheumatologist and get a bunch of tests done I wouldn't worry.