Reply To: Not diagnosed..need help.

June 9, 2012 at 2:35 am

Hi Canuck,
Your case seems very similar to mine. I had GBS in 85, but doctor at the time told me there were no treatments for GBS so I recovered through mother nature. Got back to about 85% and did well with no symptoms until the summer of ’96 when I began having balance problems, muscle twitching and grip strength loss. Went to a new neuro and he began with the usual testing for heavy metals, MRI (to rule out MS), nerve conduction, spinal tap, etc and came up with no definitive diagnosis. As my symptoms continued to get worse over the next six months, he finally scheduled a nerve and muscle biopsy which confirmed the diagnosis of CIDP. Just another avenue of exploration for you to inquire about.
Has your doctor mentioned the nerve or muscle biopsy to rule out CIDP? Based on your post, the question the doctor has not answered is why he is ruling out CIDP without exhausting all of the diagnostic tests available? Has he had other CIDP patients?
You are right about early treatment, it is very important. I wish you the best in the future and hope you get a definite diagnosis for the cause of your symptoms so you can get the appropriate treatment asap.