Following my previous posts where i was told to see a local rheumy after all this time of being treated in london 'following new management'... i have hit a dead end almost.
I have put a letter of complaint in to guys hospital, and heard back to say it is being dealt with via the chief executive. If anybody else hs been rediagnosed as fibromyalgia may i suggest you complain too. Its the only way we will be heard.
I duly saw a local rheumy who repeated all blood tests,and as my anticardiolipin antibodies arent showing at the moment he dismissed any past history/test results/diagnosis. So unfortunately im almost backmto square one. Devastation isnt the word.
My one hope i have left is that i am still under neurology at guy s and he is at present firmly on board.
My local rheumy says the following....
Fibro can cause kidney spasms.. it was probably a uti.... my urologist said in 30 odd years he had never seen anything like me before,thickened ureter,inflammation levels through the roof,too high to be n infection, i had to have cancer ruled out, yet no answrers from biopsy,but now a new urologist said the areas of my brain that are damaged can cause bladder problems....its neurological.
My opthlmologists say my eyes are fine, its the brain thays causing my problems....its neurological.
My physio says its neurological pain
My neurologist can see that my brain has prominent sulci (areas shrinking), hypometabolism in the temporal lobes consistent with antiphospholipisd syndrome, 3 miscarriages (2 late ones), damage to parietal lobesand previous anticrdiolipin antibodies igm and tsvt results.
Yet this rheumy says, people in the population have miscarriages and as my ana result is negative i have never had auto immune disorder, i shouldnt be on immunosuppressants,and he will send a letter to my doctor and all my consultants to state this and that i do not have sticky blood..... my only hope is that neurology look past this and continue to give me hope...
Im off balance, im falling everywhere,im having hallucinations, im falling asleep all the time,completely exhausted horrendous nerve pain,concentration and organisational problems,f orgetting appointments and conversations, i feel my brain being eaten away, and one man on the pretext of what onemdoctor in london has saus ive even been discharged from this rheumy with no help. I cant rolerate the painkillers im given yet he said just up the dose... absolutely gutted. After 7 years of fighting for a diagnosis i feel heartbroke and like a fraud.... how cn this illness take my sight,my brain and my babies yet not show itself when i nees the proof, how can it be doing so much damage yet be invisible and hide the one time i need it to?????
Sorry for the long one,but i jist want to cry and give up x