Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,468
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
We are sorry for your problems but you have been cleared of ALS so this is not the right place for you ( lucky you)
I hope you can find a road to the care you need.
If you were given an FND diagnosis without positive findings indicating FND that is wrong. There are experts in the UK on FND ( more than her) and you might want to see one. If they rule out FND then you have a stronger case to pursue other diagnoses. I know UK FND patients have had success in being seen out of their cachement areas if there is no local resource
I don't think you need an MND center but your statement they do not exist in the UK is incorrect. I don't know your area but for the record I know ones in London ( Kings) ,Sheffield, Oxford and Cambridge ( Addenbrookes). I know there are others. I have been to the Oxford MND center and several members of my family are followed at Addenbrookes
I hope you can find a road to the care you need.
If you were given an FND diagnosis without positive findings indicating FND that is wrong. There are experts in the UK on FND ( more than her) and you might want to see one. If they rule out FND then you have a stronger case to pursue other diagnoses. I know UK FND patients have had success in being seen out of their cachement areas if there is no local resource
I don't think you need an MND center but your statement they do not exist in the UK is incorrect. I don't know your area but for the record I know ones in London ( Kings) ,Sheffield, Oxford and Cambridge ( Addenbrookes). I know there are others. I have been to the Oxford MND center and several members of my family are followed at Addenbrookes