Need diagnosis! Circulation issues and neuropathy with ANA escalating

Posted by wsp @wsp, Jun 2 1:51pm

I seem to have stumped neurologists and rheumatologists. ANA has doubled. is current speckled pattern 1:3240, but also has a cytoplasmic fiber pattern present. Have had raynaulds in the past, and other GI autoimmune issues. Currently weak positive to Anti-centromere and weak positive MI-2. Low mean platelet volume. No one seems to think I have either scleraderma nor myositis which is good. BUT… Neuropathy, planter fibromas, and possibly poor circulation and skin hardening are my top concerns. It’s escalating and I have no cause or diagnosis. They say not diabetes. Anyone with similar labs? Diagnosis? Treatments? Thanks.

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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"?

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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.

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@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!

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