Getting worse daily means seek Drs daily

September 1, 2010 at 9:35 pm

Everything Dick S said and more.

My lumbar punctures were normal, my disease process is not normal nor is yours. Call the Drs office and request an immediate appt, not a followup.

No matter what, find a neuromuscular specialist if not one of the 7 GBS Centers of Excellence.

In fact, at least two, maybe more, of my EMG/Nerve conductions tests stated “…no evidence of demylination…” however, the nerve biopsy (mentioned above) clearly shows evidence of something.

In my case, Mayo Clinic Rochester and Northwestern University in Chicago have said they “prefer” a diagnosis of cidp over multi focal motor neuropathy (MMN). Furthermore, they said that my condition may be a variant of cidp.

So, there is no easy test, there is no simple answer. There is doing what dick s said. Be informed.

Yes, I had a special form of nerve biopsy. Invasive? Yes, they cut me open and took several lanes of nerve freeway out. No problem, there’s lots of lanes.

Complications? Yes, it hurt like blazes for a week after. sort of like having a thunderstorm up and down my arm

Worth it? for me, yes. would I do it again? yes.

Persevere. Learn. Be your own Champion, no one else will.