Reply To: Not diagnosed..need help.

June 11, 2012 at 3:38 pm

Sorry to hear you are going through this!! It isn’t easy when our body’s give us such a struggle!!! I had a normal needle EMG x 3, and NCV only one area showed demylenation around my knee (which is where I was initially sympotmatic).. They did TWO lumbar punctures on me, and testing and more testing all while I had to wait and go to more appointments and wait longer.. it was SO frustrating.. Finally I was admitted to the hospital for IVIG treatment.. anyhow the way they ended up finding my diagnosis of CIDP was skin/epidermal nerve biopsy- low risk, easy procedure with only local anesthetic, I believe a few others on here have had it as well.. sometimes I guess it doesn’t show up on EMG/ncv, but will on there.. As far as the LP goes.. by the books you should have elevated protein, but it seems a lot don’t as well!
As far as them waiting to treat you.. I had the same frustrations.. when I was in their office they thought well you “look” ok.. they would tell me how people would come in in wheelchairs and dragging their legs.. they didn’t seem to understand that I was only 30 years old (before this very atheletic jogger etc) and I had a newborn and 1 year old and full time physical job.. that I coudln’t wait to be dragging limbs (not sure why this is a hard concept for some dr’s to grasp) They even told me it appeared my muscles were functioning like they were 90… but said “if it worsens we will start treatment” haha.. it wasn’t acceptable to fucntion like a 90 year old for me!! Anyhow I saw quite a few outpatient neurologists before (I was so weak and tired, the last thing I felt like doing is seeing more drs.. but i needed help) getting referred into the university ALS/NM clinic they moved up my appointment and then admitted me into the hospital- my breathing was quite affected by this point…. Anyhow, the unkown is the worst.. I was just about to head to mayo myself before I finally had someone help me here locally. Good luck!