Quote:
Originally Posted by Clareb
My thanks to you and mrsD. Is your PN progressive and have you identified a cause? How were you diagnosed? I live in the UK. We're so lucky to have the NHS - my care & countless expensive drugs have cost just £104/yr. The downside is the huge budgetary constraints and lack of control that we have over our care. Private medicine is quite small scale here and facilities limited.
The suggestion of my drugs being the cause is very plausible. Consultants are very reluctant however to entertain these thoughts - I had many lesser documented side effects from Methotrexate, Stemetil, iron infusions and even Penicillin! Lupus people are ridiculously intolerant of drugs.
Thank you once again. Clare
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Hi,
My official diagnosis is small nerve fiber polyneuropathy, SFN, PN are easier to write! My Neurologist suspected it the first time I saw her in consultation regarding my complex regional pain syndrome (CRPS). SFN was confirmed by sweat test failure and skin biopsy. It is progressive for me. What started in my feet has moved up to my knees and my hands to elbows are also involved. I also have Erythromelalgia and CRPS in my feet and hands so sometimes it's very difficult to know which condition is causing the pain. Until recently, no underlying cause for the SFN had been
found despite many blood tests. A week ago I was diagnosed with Sjogren's Syndrome, which may be the cause of the neuropathy but may be secondary to it. More work to be done to sort it all out! Although our healthcare systems are different, I sometimes feel that I have no control over my care as well! I'm fortunate that I have seen medical professionals who understand these conditions but that is not the case for everyone. I don't know if you would agree but here I think we suffer because in many cases, no one provider advocates on our behalf and facilitates getting us the right specialty care at the right time. We are left to figure all this out on our own, all the while trying to manage unbearable pain and other symptoms. Sorry I digress but other healthcare systems are fascinating!
I hope you are able to get things sorted out soon Clare!
Deb