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Scleroderma & Raynaud's UK (SRUK)

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Diagnosing Scleroderma

Maggiet profile image
7 Replies

Hi everyone

I went to see my gp recently as I have had an increase in the severity of some symptoms relating to cold extremities of my body. My fingers have white patches on them but not as bad as some photos I have seen. I get cold ears, nose, toes, fingers and nappies! I have a plethora of chronic conditions - migraine, tinnitus, hypothyroidism, alopecia, small fibre neuropathy, lichen sclerosis and Wear and tear arthritis. My gp diagnosed raynaud's with a query regarding scleroderma and referred me back to a rheumatologist that I had seen before re Sojrens. The tests for this were negative. She has written back to say I had a blood test for antinuclear antibodies back in May2015 and as this was negative she ddidn't think it was scleroderma. She has put me on the list for capillary tests.

Sorry for the ramble but if any of you guys have any ideas about all this that is going on I'd love to hear from you. By the way, that should read nipples not nappies - darned auto correct!

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Maggiet
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7 Replies
zenabb profile image
zenabb

Your GP is right to refer you back to your rheumatologist. Insist. I hope that you are on medication for your Renault at least. Best wishes.

Maggiet profile image
Maggiet in reply to zenabb

Thank you for replying. Yes, he's given me the meds for Raynauds, but the rheumi seems quite dismissive. I was originally referred to her by my neurologist, but all she seemed bothered about was the Sjogrens. She said the problems with my joints was just wear and tear, despite the fact I can't move one of my big toes at all and you can actually feel the crepitus in my knee. Once it wasn't Sjogrens she discharged me from her care and back to the GP! I'm going into hospital for steroid infusions in a couple of weeks so I'll ask when I'm in there if it's worth going any further.

Maggiet profile image
Maggiet in reply to zenabb

That post should end - with any further requests for a consultants view on the possibility of sclerosis.

BalancedConcepts profile image
BalancedConcepts

I cured mine by removing dairy and gluten from my diet. You can check for food sensitivities from a practitioner who deals with Cyrex Labs

Maggiet profile image
Maggiet in reply to BalancedConcepts

Thank you very much for your help. I'll look into that right now x

I do hope you get referred to a different rheumatologist. Negative ANA doesn't mean you don't have SSc unfortunately. I've positive and negative tests and I sure as hell haven't cured myself ;) the nailfold capillaoscopy will be really useful though :)

Maggiet profile image
Maggiet in reply to

Thank you for your reply. I'm glad to read that the capilliroscopy (SP?) would help decide the way forward.

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