Reply To: Diagnosis problems

August 12, 2014 at 12:28 am

Hi, welcome, and so sorry you are going through all of this..

I have been going through this for 3.5 years, and my tests are not conclusive really either.. I had bilateral onset weakness, with numbness as well, progressed from feet to head over the course of three months.. clinically sounded like CIDP.. but the only findings on NCV/EMG were slight demylenation around my knee on 1 of the 4 emg’s in 4 months! Dr’s brought up ALS and many other possibilities that freaked me out! Anyhow I crashed, couldn’t breathe and ended up in the hospital when they tried IVIG, since cilnically I sounded like CIDP.. it saved me.. turned me around – I could grab onto crayons with my kids again, i could smile again (my face didn’t work before), I could breathe and swallow and walk without a waddle again..

I did have an epidermal nerve biopsy (for small fiber neuropathy).. this came back extremely abnormal.. showed a severe non length dependent neuropathy.. they thought this kind of sealed my diagnoses.. of “inflammatory neuropathy” (my ANA was pretty elevated).. The epidermal nerve biopsies I guess they don’t do many places, but I would ask your doctor about them..

How much numbness/tingling do you have? Do you have muscle wasting? With your crashing with colds (similar happens to myself.. i get noticeably weaker the day before I even realize i’m getting sick – with any immune stimulation it seems to flare).. Have you thought about myasthenia? Lambert Eaton? have they tried you on oral steriods? Have they tried you on ANY meds? Mestinon or anything?