Reply To: First time poster, longtime reader

May 24, 2013 at 4:05 am

hello, so sorry to hear of your troubles.. I am negative for CIDP workup as far as the EMG/NCV.. I was 30 years old when I developed symptoms, and now about to turn 33.. the first dr I saw told me he thought it was ALS (i was a new mom of 2 kids under 2 years old, talk about freaked out)..
once he did the emg/ncv, they said defintely not ALS.. i did have one area of demylenation at that time on the knee .. esp with the GI symptoms and everything else I had associated with it.. I continued to worsen with all limbs affected – swallowing and speech.. everything! I ended up at the ALS university clinic here.. normal emg/ncv.. they say as bad as my weakness and symptoms were ALS wound show up at that point on emg.. anyhow, they did do a skin punch biopsy (epidermal nerve biopsy).. it came back very abnormal – dx a non length dependent neuropathy.. have they tried that with you? are you at a major university neuromuscular clinic?
I am on IVIG, as I crashed, coudlnt’ breathe and my PFT’s were low.. almost 2 years ago now.. I have some progression in some areas and am way better in most with the IVIG>. it’s scary when you dont’ have control over your body, no one knows why, and you don’t know what your future holds- ESPEcIALLY when something like ALS has been brought up.. MY thoughts are with you, It’s not easy!