Big Thanks to MaryF AND Kate. Finally a referral to St Thomas'!!!!

Hi all - I have finally had an agreed referral to St Thomas' by my Neurologist!! I have a feeling He just wants rid of me to be honest - and in his own words he doesnt understand whats going on with me inbetween bouts of migraines, and that neurology is a 'bit of a dumping ground'. So I await the referral. I have been to see rheumotology who know nothing about it, Opthalmology and neuro opthalmology who say that my eyes are fine its neurological nerve damage, My physiotherapist who confirms muscle wastage down to neurological problems, My Neurologist is very good and its down to him i have got as far as i have,but I think i really need to see a specialist for the support, My GP wasnt willing to refer me as he seems to think that once you are anticoagulated that is all that can be done, and i accept this completely, and i am very lucky to have such a fab doctor I have to say, but I feel I should see somebody who understands the implications of this nasty invader of our lives as the pain levels im experiencing just arent right. I had another stroke - like episode last wek and ended up back in the stroke ward but it was put down to migraines - yet the eye pain has been here constantly for 13 months - surely no migraine lasts that long!! But i at least have a diagnosis and medication for migraines which is better for me anyway! My eyes continue to trouble me - but since the aspirin two weeks ago was started alongside the warfarin the black cloud that was in my left eye has not been back! Sorry for such a long one but my last question posted I was very down beat so I thought i would post a good one to make up for it - thanks all xxxx

12 Replies

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  • Ah, that is great news... we do our best collectively as ADMINs to help... as we ourselves have all chipped away at the system also. Good on your neurologist. Very pleased for you, do let us know how it goes. Mary F xxx

  • Well done You! I really hope that when you get your referral it all goes well. When I lived in the UK I couldn't find fault with the treatment I received from all the staff at St. Thomas'. xxx

  • That gives me hope thanks very much - i find myself going through the thoughts like probably most people who have been round the system like us hughes', that we bank all our hopes on these new people to see and then it doesnt go our way and as this is my last hope then i feel really very nervous!! Im so good on some days and so bad on others and testing seronegative for everything that even i question if theres anything actually wrong sometimes - but then you dont get strokes,migraines and lost babies at 30 for no reason! I do hope youve had some great help over there xx

  • glad you got refered, let us know how it goes :) xx

  • Does anyone suffer with sleep problems? Some nights I just can't get to sleep. I am wide awake for most of the night and wondered if anyone else has nights like me? This happens now and then and occurs right out of the blue. It's annoying and obviously adds to my general painful symptoms - Hughes and Sjogrens.

  • Hi hon, I have had problems sleeping for about 20 years. I would go several nights without even a few minutes sleep. I tried everything, but no luck. My doctor said that many people with auto-immune conditions have a sleeping problem.I have taken half a sleeping tablet for 10 years now. I would keep a sleeping chat from now until your next visit to your doctor and ask for help. There are good natural remidies at the Chemist and health stores you might want to try as well. Note what happens on your chart. Make sure Chemist is aware of any medication you are on. Good luck.

  • That is meant to say sleeping chart. Not chat...sorry!

  • Thanks Jane-Martin, that was helpful. I shall start charting and watching for patterns. Not keen on sleep meds but have tried amitriptyline without result.

  • Great news EmmaJ - but I hope you are not referred to neurology at St Thomas' as APS is not their field of expertise. Ideally you need to be seen by the Haematology Team led by Prof Beverley Hunt or the Lupus Unit led by Prof David D'Cruz. I hope you finally get the help you deserve :)

  • Well done for getting a referral. Hope your wait is short. :)

  • My neurologist has told me hell refer me to dr kamhashta but we;l see x

  • He's brilliant you wont be disappointed!

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