Saying hello, looking for help
 

Friendly hello @ all! :)

me, male, 33, celiac, since 2014 neurological problems: walking issues (gait problems), pain/parasthesia sensations in the face and burning/stinging pain in my hands from the wrist up. Also having orthostatic problems.

Spent a fortune on different doctors, lots of neurologists, got misdiagnosed quite often, psychosomatic is one of my favorites "just in your head"..probably many people here know what I'm talking about :rolleyes:

had a lumbal puncture last year, complications were a liqor leak & thrombosis in the brain :( at least the didn't find anything in the liquor..

recently non length dependent small fiber neuropathy diagnosed (skin biopsy), fabry was negative (enzyme levels barely normal)

that leaves me, 33, unable to work full time (barely managing the current work load), pain getting worse despite taking 400mg Pregabalin (Lyrica) a day. next step probably ivIG...?

I hope to find some friendly people here with similar problems, maybe life will get a little easier if you don't have the feeling to be totally alone with your illness

thanks :)

Hi Franz

Welcome to NeuroTalk :).

I see that you have found the peripheral neuropathy forum. It is very active so I am sure that if you post there you will get lots of support and good ideas from other members.

Best wishes.

The pain gets easier to manage over time. It's the first few years that are scary. Amazing how the body can adapt

Thank you for your response. I really hope it's true, unfortunately right now the pain still gets worse. I hope that I will feel one day like my normal self again.