Hello all, Just wanted to update on my trip to Dr. C at JHU. As Meadow said he performed a rather thorough exam. I was interviewed for 2 hours. Blood drawn 13 vials. And I was given an EMG and NCV study twice. Based on my history and the results he assured me that I did not have CIDP. When I asked what do I have? He said it was idopathic and it would be a diagnosis by exclusion. He said for now we will say it is ALS, we will get you in the clinic and continue testing. Hopefully we will find something else. But for now you have ALS. Not good news. I just want to say thank you to all and my prayers are with you. Looks like I’ll be spending time on the ALS websites. I’ll check in every once in a while just to say hey.

Cheryl,

I would like to add my welcome. Sounds like your in the same boat as I. I was dx’ed in November with CIDP. I had a round of IVIG(5days) the week before Xmas. Felt as if I was getting stronger. Then on Jan 3 I had an attack of muscle spasms. I fell in the hallway and felt as if all the muscles in my body were gramping. I was taken to the ER and given a shot of Valium and some Gabapentin(generic Neurontin). I was released and went to see my Neuro. He set me up for another round of IVIG. This time I felt no change. I went again the end of February again no change. I was continuing to weaken. The neuro decided to forgo any further IVIG. He conducted another EMG and determined that I was indeed worsening. He sent me for a muscle biopsy. Then he started me on Steroids(Prednisone 60mg/day). The biopsy came back and there was no muscle inflammation. He told me to start weaning from the Prednisone and he wanted to get a second opinion before proceeding. I now have an appointment with Dr. Vinay Chaudhry of Johns Hopkins Hospital. I am hoping that he will be able to confirm a diagnosis and recommend treatment. I have only been on this forum for a short time and I have found it to be very informative. The support and camaraderie of the members is greatly appreciated. I hope that you find it as well. I pray that you find a treatment and a cure. Hang in there and keep the faith.