Following my previous posts....now undiagnosed

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

11 Replies

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  • Don't give up, I am glad you have taken the time and courage to write to Guy's Hospital, as this simply is not good enough, was the local Rheumatologist off the recommended list we suggest or not? MaryF

  • No mary it was a request by guys to my gp to get a local rheumy and i just went along to the appt. Unfortunately for me now that is two rheumys who say 'just fibromyalgia',a nd i dont see the point in going through all the stredd again to see anither. Im sticking with neurology x

  • and if you are needing a local one it must be off this list: hughes-syndrome.org/self-he... and I do suggest you complain politely about the one you have seen locally as it is simply not good enough. MaryF

  • Also do fill in NHS Choices both locally and for London, give feedback. MaryF

  • I'm sorry to read this. I hate reading posts like this when people are suffering so much and not getting the help.

    Don't give up, there are doctors on the list who truly understand and can help you xxx

  • I have seen two off that list already thanks maryf x

  • My heart goes out to you. I am so sorry you have to go through all this. So many doctors don't get this disease. It's beyond frustrating. Don't give up! God bless you.

  • Here in the states, many people I know with strange illness manifestations and symptoms have found diagnosis and treatment from Cleveland Clinic. That is probably not practical option – but I thought I would mention it.

  • If it's suspected APS, have you had any clotting incidents and have you seen haematology? I don't mean they send bloods for analysis, but an appointment with haemo consultant. I saw haematologists several times when my diagnosis was inconclusive and when trying to see if I could do anything to stay off anti-coagulants (I'm about to leave the Forces, indirectly because I can't do much on warfarin...).

  • If I were me Emma I would save all my pennies up, lean on relatives if necessary and go to London Bridge with all your tests. Its at times like this that unfortunately you need someone like Prof Hughes to TELL them what is needed!

  • I thought that but i hear prof hughesisnt taking new patients on. Ive been throuh my notesfrom other consultations and every other consultant i have seen agrees with khmashta,we cant all bew rong. Im goung to put a letter together with ll my documentation so it cn nevr he questioned again and take it to any appountments in future. Fibro does not give you blood clots! X thank you all for your time and kind words xx

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