Hello,
As I am also from Holland, and recently diagnosed with sfn, I would like to know to which specialist in Maastricht you have been. I do have a lot of other questions and would like to get in contact with you. I have these strange sensory and feelings feelings already for years. It took me 5 neurologists to be finally diagnosed with sfn by taking a skinbiopt. The next step will be to go to Maastricht, a specialized medical center for this disease.
I am reading a lot now on sfn, and come across new treatments like low level lasertherapy. Anyone any experience? Also supplements like alpha-lipon acid.
Els
Quote:
Originally Posted by FlyingDutchWoman
Wow  than my 25mg is just a candy.
Actually I have the best neuro in the Netherlands; there is one hospital specialized in SFN and accidentally it is the hospital I visit. In Academic hospitals here it's normal that real specialists are supervising the specialists that are in education (the 'students' are only studying for neuro, they are still real doctors, not that you think that a girl of 18 treats me  ) Two of that educating specialists are specialized in SFN and last visit I was offered to speak to one of them the next time. That's quite special; in 'normal' cases/with average diseases you have to stay with your studying doctor and that's it.
I was tested on many things, I still have to take the English protocol to check if really everything is tested but I think so, so I guess in my case it really will be an idiopathic SFN. And one day the progression will stop, hopefully. |