Thank you for all sharing your experiences and knowledge
Thank you all so much for your replies. Kevin’s symptoms began in jan/feb 2006. He ignored them for some time thinking they he had strained a muscle or worked out too much. It became obvious in May 2006 that there was something serious going on and that is when he talked to us. Things moved quickly from there with many tests being done to arrive at the diagnosis. Kevin has had two EMGs, one in June 2006 and one in Sept 2006. He was hospitalized late June, July of 2006. During that period, the drs did a ton of procedures – spinal taps, mris, cat scans, bone biopsy, gastro work, cardio work up, and kidney test. His major organs are great. He went in sort of walking, and came out in a wheelchair. He had OT/PT in house, then as an outpatient and has stabilized to where he is now. He is taking lexapro for his depression. He takes vitamin supplements, including omega3 and calcium. I also have him drink this green tea and ginger brew that I make for him. He was discharged from pt/ot in January because he was at a point where he could not make further gains. He has very little strength, he has hand and leg tremors which make it very difficult for him to write. He is lucky to have some very loyal friends who visit with him and take him out. He loves cars, plants, and our two dogs.
Kevin does feel that his neurologist dr is not really helping and as engaged as he thinks he should be. I think we do need to have a consultation with a dr who knows more about cidp and will try other things to improve Kevin.
Finally, I read some of the replies to Kevin. It made him feel good that there are other folks out there who know what he is going through and are interested in him and his well being. I think you will all hear from him soon. Thanks again.