Reply To: Hello, I'm new here and looking for a little help

March 15, 2013 at 3:02 am

Steve – you sound very much like myself – symptoms x aobut 4 years (twitching and foot a little weak, but never thought much of it) and then after having my son 2 years ago and having a medical procedure go bad I went downhill FAST!! I had GI issues as well – they didn’t call it IBS as I lost so much weight with it and that is an exclusion criteria for IBS.. it was suspected possible crohns or something to that effect.. however interestingly I had a postive CMV titer a few weeks into my symptoms (which it was negative at the end of my pregnancies).   Anyhow.. i declined quickly – swallowing and speech were involved, as were my eyelids and just droopy face – droopy everything!   I crashed and ended up admitted and started with IVIG..   It was a miracle, as after the 2nd round I was 99%- i couldn’t stop smiling for the 2 weeks it worked until it started wearing off (I was 30 years old, but the first dr told me I might have ALS.. so I was a wreck)…..      All my emg’s were negative, except one NCV showed demylenation of my right knee (which is where my first symptoms started)..

I was a big risk for lyme as I hiked in new england for years and had many tick bites .. it was always negative however.. I am 2 years into all of this and doing fairly well.. I have breathing difficulties at times, weakness all over , atrophy all over.. but I am doing SOOO Much better than i was 2 years ago, its a miracle!  I am hoping IVIG has the same effect for you!!!   (oh and I have never had the classic CIDP findings on testing).