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Hi!
I’m looking for a specialist in the UK who might be able to help me. I’ve been ill since I was 15, I’m now 38. I was originally misdiagnosed with ME/CFS but more recently diagnosed with POTS and Joint Hypermobility Syndrome. I have suspected EDS and possibly an autoimmune condition too. I am HLA B27 positive I’ve had bouts of Reactive Arthritis and there is a family history of psoriasis.
I have been disabled for many years with joint pain and many other symptoms. In the past two months I have suffered with severe neck pain that starts in the base of my skull and radiates into my neck and shoulder. At it’s worst it radiated down both arms causing pain, numbness and tingling. I also have loud ringing in my ears and numbness and tingling in my hands. The pain is not relieved by codeine and morphine and I can barely function.
My GP does not know what to do with me. I had a supine MRI which was normal apart from some early arthritis in my neck, which is not severe enough to cause the pain I am experiencing.
I recently tried fludrocortisone for my POTS and had a severe reaction. Within an hour of taking half a tablet I had a severe crushing headache and numbness and tingling on the left hand side of my face. My blood pressure was much higher than normal, I was evaluated for stroke at Accident And Emergency and sent home.
I am waiting for an appointment with a rheumatologist for a diagnosis but the waiting list is over 22 weeks. I an really struggling with the pain and I can barely look after myself never mind my husband and three kids.
I mentioned the Driscoll theory to my GP but she refused to prescribe Diamox because of the dangers and side effects. She has agreed to send me to a neurologist but I don’t know who would be best to see.
Does anyone here know of any neurologists in the UK who understand EDS and POTS?
TIA!
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