Dawn;Jan;WithHope;Cathy C.

August 28, 2008 at 5:22 pm

Thanks for your concerns and wishes and prayers. We are back from Cleveland Clinic but are very down. No diagnosis yet and not too sure we will have one. Dr. Levin said the biobsy is not completely looked at yet,the urine test not done, blood tests not completely done but xrays are ok.

I am a little confused as outside the earlier I peaked out as he was checking on us if we were done with the emg. At that point he said the blood tests were all ok but waiting for the xrays. Unless I am crazy it is the oposite of what we heard later. Anyway he suggested no more plasma phersis but to do another ct scan of chest (our family dr did this early on) and go back on prednisone alone. Bill was so disappointed as he was so unhappy with that and then the fact that he ended up with sepsis yikes. He said he was on for 6 weeks and would like to see him try it again without the imuran for at least 3 months.

As far as repeating blood tests (not until spring with him) his blood has been clensed and washed with the pp so he needs to repeat.

The rest of the results will be in about 2 weeks. I know that is not long but we were hoping for anything to give us today. Just something positive. He says it is not cidp and is not demyilating . I asked if it was progressive and he said yes. I am suggesting to Bill after the two weeks to send everything to Mayo as we do not have to go there, you can send everything you have to them for review and not come yourself until they say they can help you.
Do not know if we can get the biopsy back again. They send it back to Thomas (tennessee neuro) and he has to send it back to someplace.

WithHome: what came of your visit to Dr. Levin. I am guessing you do not have multiple myaloma (sp?) What did he do for you and what is your dx from him. Tell me more please.

Sorry so long. I will be home Sat or Sun but will still use this computer at friends home until I leave for Columbus (our sons) sometime tomorrow. I can use his also.

Thanks for info and sorry so long. Just very unhappy right now.
Joanf:confused: :confused: