I had to leave work (assembly line) at the end of September due to extreme back pain that was wrapping around my chest. After 2 months I was able to see a neurosurgeon who could find nothing surgical to fix. But did find a pituitary adenoma though. He did cranial to lumbar MRI.
I knew my cousin was having some of the same problems and he referred me to his geneticist who did find a variation in the ABCD1 gene that she said was disease causing.
I don’t have an appointment with a neurologist until January 15. And endocrinologist February 14. The neurosurgeon did send me for a round of epidural injections to try to ease the pain the final one is tomorrow. They have helped with the back pain and the pain wrapping around my chest. I just hope that it’s not a short fix.
I recently turned 44 (Christmas day) and have a terrible gait that I have started using a cane for. I have had knee pain for years that orthopedic couldn’t find a cause for. And have noticed for a long time that my feet have felt funny, I just never knew why. I have been having incontinence issues and using pad during the day and depends and bed pad at night. And of course the ED. I can’t believe I’m telling all this, but for the first time I feel like I have people I can talk to and not feel embarrassed. It’s been difficult for my wife to deal with so far. Partially due to no real answers yet.
Is there any advise on what I need to approach the neurologist with other than my genetic report? My primary doctor did put me on Gabapentin to help with some pain. I think it’s helping, but I still feel light headed at times and lose my balance. I won’t lie, I’m terrified myself not knowing about any lesions or having any treatment options. I also have a 17 year old daughter, does she need tested? Or does she have it by default?