from JoanF regarding husband

December 30, 2007 at 3:17 am

[QUOTE=Dells mom]I don’t mind talking with you. I have a 3-1/2 year old with cidp so some things could be different.

My cell is 228-282-5050. Please don’t call later than 8:30 at night, central time.

The daytime is the best time to reach me.

Thanks Lori: We have since gone to a Doctor (believe it or not ) in Knoxville and as of Friday the 28th he had a ct scan, blood work, and a spinal tap. We were finally refered to him from the first Neurologist my husband went to (the one that would not let us see his partner) If this new dr. does what he says it would be great and if not we will look further. He claimed he will improve him before March in which we are taking our grandchildren to Disney in Florida. Said we will not need a scooter. It has been 22 months and after giving the Dr. all the history he agreed with us that he has cidp. At least for now until results are in for sure on the diagnosis. No feeling in his feet and partially us his legs. Losing muscle tone in lets. Hands starting to get tingle. Hope it is not too late. We were concerned about going out of state or even to Nashville as treatment may cause us to travel for long periods. We are new to this but would go anywhere if things do not improve . We tried talking to the foundation and they did not know of anyone in our area . One person suggested asking our insurance Co. They do not offer suggestions only doctors who are in our network. Was very disappointed with her answer.

I will give you a call if only to find out what to expect. We may have to also have a biopsy of his foot nerve but realize it is permanent. We read somewhere that just a biopsy of the skin can do the same. Does anyone know if this is true?
Thanks for your offer. Will try and reach you tomorrow (Sunday)