Need diagnosis! Circulation issues and neuropathy with ANA escalating

Curious how you know the anti-centromere antibody was low positive. I got a result of >8 with no specific number. My ANA has been as high as 1:5120 for years with a skin biopsy years ago that showed lupus, dermatomyositis or connective tissue disorder but ended up with lupus on record. Now with a positive anti-centromere I am pursuing whether I actually have scleroderma.

PCP's and general rheumatologists don't seem to know much about scleroderma. I found an actual scleroderma program and checked the docs to see if that was a focus for them or at least one of them.

Raynaud's, skin hardening, and GI issues all sound possible for scleroderma.

We all spend years chasing these things down. I have gotten so I don't even pursue some things. With possible scleroderma we have to see a lot of specialists. I will be reading this to see what is posted.

In the meantime if you have time, can you explain the "low centromere"?

I also have plantar fibromatosis on both feet, and in my hands (Palmer fibromatosis). As well as poor circulation (but i thought circulation issues was from smoking cigarettes for 30+ years), ANA is high off the charts high. I haven't seem my rheumatologist this year though. I also have Raynauds, Hashimoto's and Sjogren's. I have other issues, too 😂 probably the main one being bladder cancer.
I hope they find a diagnosis for you. You hang in there and stay strong.

@wsp You’re quite right, most doctors don’t really know about scleroderma or any of the other autoimmune diseases. That’s exactly what I experienced when i was trying to find out what was wrong with me. They just thought i was dehydrated, whatever. But I wasn’t, I had lesions on my brain and no one knew what to do about them! My husband then called the university medical center, about 1 hour away,’ and asked for help. The doctor recognized it right way. I’ve been under the care of UHC ever since.
I think you should did a university medical center or comprehensive medical center near you. Call then and tell them no one locally can help you. But first, in a journal make a list of all your problems with the most serious at the top.
Think you can do that? Be sure to let me know how you do!

I hear you! Very well said. Congratulations for advocating for yourself, your health and ultimate wellness! You totally inspired me to take action and continue to be proactive & proud of my own medical conditions! 🙏 thank you

I know how frustrating it is to be ill and not diagnosed. I spent a decade in that boat. There’s a condition called mixed connective tissue disease (MCTD). It’s a combination of lupus, scleroderma and sometimes polymyositis. The hallmark serum antibody is RNP. You might look at the labs you have had and see if that one was done and if it’s elevated. You can also see a dermatologist and request a skin biopsy of the tight or thickened skin with immunoflourescent studies. That second part is crucial and must be ordered with the biopsy or results may be inconclusive. I would check out the Dr by phone first and ask if Dr has seen any patients who have scleroderma since it’s uncommon. You might also read about CREST syndrome, which includes esophageal dysmotility. I hope you get answers soon! Please let us know what transpires.