CIDP/Kidney stone

April 3, 2010 at 10:48 pm

Don has been on Rituxen, worked for a while, but began to have same response as with IvIG – nothing. It acts as though his body had become immune to the two drugs. He is on Neurontin, Hydrocodone, Lyrica, Baclofen and Midodrine. The baclo..and Mido…are due to back spasms and low blood pressure, respectively.

My husband did receive Morphine for the pain, however, the shots did not respond. The nurse finally called in and gave him two other injections, of which I can’t recall the name, and these finally kicked in and helped alleviate the pain much better.

I do am not aware if he is getting extra calcium with his treatments. I thought I had been doing pretty good in staying on top of things, but now I realize that there are still so many more things I need to find out.

I know I have overwhelmed our precious Hematologist with questions, and I feel at times he just doesn’t know what to say. However, we both appreciate him for being up front and frank and just simply telling us he is not sure of an answer at this moment. But he always reassures us that he is looking for answers.

again, thanks for all your help. I trust that some day I, too, will be able to provide sound advice as all of you have done for me this day.

1 Blessed Lady

CIDP/Kidney stone

April 3, 2010 at 10:30 pm

😀 Thanks to all of you for taking the time to write. As far as the neurologist is concerned, my husband and I fired him and the nurses would not allow him to reenter my husband’s room. They told him he was no longer to be our hospital neurologist. We were so grateful to them for doing that, although we were prepared to take care of it ourselves.

Don does not appear to be responding to IvIG any longer. No sure what our Hematologist will do, but for right now, he is only doing the PE. I am planning on spending tomorrow evening at the hospital so that I will be available when he comes in on the early morning rounds to see what his plans are for Don. This doctor has told us that Don has all but one of the criteria showing MG. I have not been told of any labwork, although our regular neurologist has told us that she felt he had MG as well as CIDP. Just no labs yet.

All of you just made me feel so good. I appreciate your freedom in letting me know the anger and frustration you are not only feeling for this terrible disorder but for our situation as well.

Many blessings on all of you. I will discuss your questions and concerns with my husband the our doctors.

I just pray that they will wait until Don is able to maneuver by himself before releasing him home. I am a one year cancer survivor and am facing bilaterl knee replacements in the future and am just not able to tend to Don like I once did. We are looking for assistance in the home, which will be a much needed blessing for both of us.

Again, thanks for taking the time to share your thoughts and concerns with me.

Wishing many blessings and grace on all,
1 Blessed Lady