I'm at my doctors tonight and would like to ask him to send me to a specialist as i am not happy with the Neuro i saw.
can someone please give me a name of anyone in the UK who is good please.
many thanks
I wish You all the best and if you find one I for one would appreciate the name!
Met with a Neuro this week and they have (after all their specialist meetings) admitted they have NO IDEA what is causing the issue. Now they have opted for a PET SCAN where they inject a radio active whatever and then do the scan and this is supposed to look deeper into the head and indentify what the MRI cannot.
After this another MRI with a different injection to the last one for why I have no idea. I have a two hour drive for the PET scan and two hours home.
Basically they have run out of options and are clutching at straws as far as I am concerned. NO WAY any of them will get to get inside my head for ANY reason.
Whatever is the cause is the cause and I have it under control with medication so it will stay that way.
Good luck on your search but I couldn't recommend any I have seen and me thinks You will probably find the same. Lots are 'liked' by their clients but that does not equate to their clinical experience and expertise.
i though you were in the states?
well, my doc is referring me to someone in cambridge as i wasn't happy with the two i have seen, one watched me cry my eyes out for 40 minutes before saying 'you'll have to learn to live with it' and the second never gave me the time of day. i won't stop till i've got some answers, i mean with the second bloke i saw told me i have ATN because i have this on both sides, well no, mine was caused because i had dental work on both sides in one day.
you'll have to let me knowhow yours is going and if this doc is any good i'll let you know.
Mine is left side only and I am down to 50mg Lyria three times a day and next scheduled GP visit I will be asking to go to 25mg doses with a view to getting right off it altogether. Seems I may well be going through some sort of remission but the comments on the net tell me it WILL be back!
Started with a slightly sensitive upper cheek area and progressed veru slowly. Went to optomertrist who noticed the left eye wasn't closing fully.
From there it went from bad to worse but most of my medication was driven by me with a very willing GP to let me try things.
Looks like we all continue searching for the ultimate superhero to fix it all!
Good Luck
I was in a support group in Cambridgeshire and several people saw a man at Addenbrooke's. There is Prof Zac in London she is a lovely really cares and understands. She is also the medical advisor for TN association UK.
my TN was re diagnosed and i SUNA. I see Mr Matharu in London.