Ella

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  • February 19, 2015 at 11:16 am

    I have been on IVIG since 2009 for CIDP. I was diagnosed with small cell lymphoma in 85% of the bone marrow. The oncologist prescribed Rituxan once aweek for 4 weeks. They now have it set up for me to receive 4 treatments every 6 months. I had a problem a few months ago with the billing for the IVIG treatments. My doctor said I had improved since being on Rituxan and wanted to stop the IVIG treatments for the time being and if I started going downhill then he would start IVIG back again. My last treatment was at the end of December and I have not noticed any difference. I have not had any side effects from the Rituxan except occasionally Benedryl legs.

    January 6, 2015 at 4:57 pm

    March 9, 2011 at 3:17 pm

    No to all except #6. I have a brother that was dignosed with GBS about 2 years ago, he was paralyzed, has made little improvement.

    In 2004 I had major trouble with my lower back, had problems going up and down steps, had back surgery 01-05, when I recuperated from surgery was not much better, the tingling in my feet began, drop foot and then balance problems. The surgeon put screws in my back too close to a nerve. He did not tell me, I found out when I requested a copy of the report several months later. After many doctors I was diagnosed with CIDP in 11-09.

    January 13, 2011 at 9:36 pm

    What part of Mississippi do you live in? I live in Washington County in Alabama and get my IVIG through Critical Care from Mobile. They told me it is cheaper to administer at home rather than at the hospital. They travel approximately 65 miles one way to give me the treatments two times each month. I go to a doctor in Birmingham and his office made the arrangements with Critical Care for me to have the treatments.

    January 5, 2011 at 12:11 am

    I have never taken any statins, never took very much medicine until I started having problems in ’04. If I took extra strength tylenol I would have to go to bed! Back surgery and CIDP changed all that!

    August 29, 2010 at 10:48 pm

    I was diagnosed by Dr. Oh in Birmingham last November and he prescribed a 5 day round of IVIG for the first month and then 2 days each month afterward. He also prescribed 60 mg prednisone daily. For a few months I did good if I slept over 3 or 4 hours per night. Now, I can sleep all night and sometimes take a nap in the daytime!

    Before I started this I could walk without a cane but not very well. People were constantly asking me what was wrong with me. I could not stand on my tiptoes or heels. After I started the IVIG and prednisone I had to start using a cane. I can walk fairly well now without a cane, I cannot stand still without holding onto something and I still cannot stand on my tiptoes or heels unless I am in the water. I go to water arobics and I feel this has helped.

    In March my prednisone was reduced to 60 mg every other day and in July it was reduced to 40 mg every other day. Hopfully it will be reduced more when I go back in November. I am not being bothered by the side effects as much now.

    I am better now than I was when I first went to Dr. Oh, but not as much as I had hoped for but at least I have not gotten worse. He tells me that it is a slow process for the nerves to rejuvenate and that I need to have patience.

    March 25, 2010 at 10:06 pm

    I do not have pain with my cidp. I was diagnosed after having emg, nerve conductivity test, nerve biopsy and other tests.

    January 10, 2010 at 4:51 pm

    I live north of Mobile Alabama about 60 miles. I was diagnosed in November 09 by Dr. Chin at UAB. I am using a neuro doctor in Mobile that knows nothing about CIDP but Dr. Chin advised him on the treatment plan. I have been going to a heated swimming pool 3 times per week for water arobics trying to keep my muscles and strength up. I am hoping I can get some improvement in my leg muscles because I have to pull myself up completely with my arms. I have to try to keep them strong!