Some of you might remember my issues with the neurologist in Belfast and her conclusions that I didn't have POTS, I just had muscle decondititioning? Well, I finally had my 'second opinion' appointment arranged for me by my rheumatologist. I was sent to Dr F's clinic, who I had seen before in 2007 for an unrelated issue - he diagnosed my icepick headaches (he was actually the 1st person to officially tell me I was hypermobile) so I knew him and liked him. I hoped this would bode well.
I actually saw his registrar Dr D first, she was lovely - she listened to everything I said, then gave me a thourough examinination. After that she went to discuss her findings with Dr F, then he came in and he had the results from the tilt table test I had done at that hospital last month - in his opinion my symptoms 'fall within the realm of POTS' and I DON'T have muscle deconditioning! Dr D said I was actually quite strong - I said I wasn't surprised as people with EDS usually have strong muscles as they have to do the job our tendons and ligaments aren't doing! They may get tired quickly but with physio etc they're not deconditioned.
So he's going to do some research to look into exercises and physio first before going down the medication route, but he says as a hypermobile person there's only so much 'toning' I can do. But it's such a relief to find someone to listen to me and want to help me!! That neuro in Belfast had seemed to have made her mind up on a diagnosis and then made my symptoms fit it, and then refused to listen to me when I disagreed. We started off on the wrong foot the first day we met when she refused to believe I had EDS, and she was ten times worse during our 2nd appointment, making Professor Grahame sound like quack
But Dr F said it was obvious I was bendy.
So there we have it! If I hadn't fought the diagnosis I would have been left with 'muscle deconditioning' on my file to explain all my debilitating symptoms (which made 2 pages worth when I typed them all out for Dr F) when I have no such thing! (Oh by the way, the hospital promised they had found my files and would send all my test results to my GP.... I'm still waiting.....)
Never thought I'd be happy to say "I have POTS", Lol!!!
Many thanks to everyone here for all the help, advice and care during this. Love you guys.
HEDS, Autonomic Dysfunction, POTS, ME, Fibromyalgia, IBS, Icepick Headaches, Migraineous arm, Blepharitis and a cuddly toy.