Hello.
So I had my long awaited for appointment with Dr Vanessa Martlew at the Royal Liverpool hospital on Wednesday. She was fabulous. She's so knowledgeable and very pleasant. She took my "Medical CV" from me, and was very patient when I explained that I have memory loss and had brought a 'prompt sheet' to help me remember what I wanted to say.
She completely poo pooed the fibro diagnosis and said she doesn't believe in it at all. I could have wept. BUT I didn't!! For the first appointment in God knows how long I didn't get emotional, I didn't cry, I didn't lose my way, and I was listened to. ☺☺ I have been researching and trying to find what is causing me to feel so poorly for 6 years, knowing I do not have fibromyalgia, fighting for diagnosis, I was told by by 4 doctors that I need to let it go, the MS specialist I saw at the Walton neuro centre told me I was needing psychiatric help and would talk my way into a wheelchair if I wasn't careful.( I do intend to send him a letter, along with my diagnosis) Yesterday, after 6 long years finally someone listened.
She was fascinated that both me and my Mum have had meningococcal meningitis. So anyway I will have an MRANGIOGRAPHY to check for suspected TIAS and once those results are back I'm to start on warfarin.
Ive got an urgent appointment back with my rheumatologist on Monday (never known an appointment be given so fast) and Dr Martlew has reccommrnded that I be started on Plaquenil for my exhaustion and joint pain. Im just hoping my Rheumatologist is not funny about it when I go on Monday. I really am suffering and I do need to be started on something for this tiredness. Im whacked. She was the one who VERY reluctantly referred me to Dr Martlew in the first place. She said she was only referring me because I have pulsatile tinnitus which stops when I press 8the jugular vein! I insisted I wanted to see a specialist in Hughes. She didn't think that I needed to have any aspirin or anything even following the positive Lupus anticoagulant test. I put myself on it. So I hope she's not annoyed to have been proved wrong and withholds the plaquenil based on that. You know how huffy these doctors can get.
I had a whole host of bloods done (6 vials!) All the thyroid tests, full blood count, vit D, c, can't remember the rest. Typical brain. Oh my renal re test. There were 4 pages.
Anyway I am so relieved.
Thank you so much for your help. For all the information you post here, without it I certainly would still be lost.
This place is a God send.
So very grateful. Mary, Kerstin, Abs fab. All of you. X