davidinsd

Your Replies

  • davidinsd
    October 10, 2010 at 1:46 pm

    They are giving me 1030mg of Cytoxan per infusion once a month for 6 months and then see what the results are. I have been getting 120grms IVIG every two weeks for the past 8 years. I did haave 5 PE about 9 years ago but had a negative reaction. While I have had Solumedrol in the past, I have not had it for some time.

    davidinsd
    September 23, 2010 at 1:03 am

    Hi everyone, I have my 2nd cytoxan tomorrow. Thanks for your comments. I tell you, I am even more hopeful than before. Pam, my feet have been numb for the past 8 years and I think you are right about them not healing but I can live with that if I can get past the fatigue I will consider the treatment a complete success!!

    I will keep you all updated with my experience and Thank You All!!!

    David

    davidinsd
    August 24, 2010 at 6:23 pm

    Well, 2 more days. Thanks for the reply’s, they helped. I am still walking, etc., however, my feet have been numb for the last 8 years after a sever attack following 6 PE treatments. Needless to say the PE did not work for me.

    I will keep you informed of my progress. Have a Great Day!!

    davidinsd
    April 29, 2009 at 12:25 am

    I was diagnosed with CIDP in 2001 and was just diagnosed with MG 2 months ago. My Neuro also said she had not seen this before either. Lucky us, huh? This really does explain a lot. I was hospitalized last year with all the symptoms of MG in full bloom but they did not get it because they kept thinking it was CIDP. I got a new Neuro and she detected double vision, swallowing, etc. and did some blood work that came back with MG. She then put me on Mestinon and I have felt better than I have in years.
    It is always nice know that you’re not alone and that is why I have always been appreciative of all the people who post here with the problems and solutions that you share here.

    Thanks!!!

    davidinsd
    August 7, 2007 at 1:32 pm

    Hi Miami Girl and Herself,

    I have tried everything including solumedrol. The gamunex brand seems like I get them less but even this brand I still get them. I have been getting IVIG for about 5 years and have gotten headaches the whole time.

    Do you all get more numbness after an infusion? After an infusion, I get considerably more numb plus kind of sick. It’s like that old saying, “the cure is worse than the disease”.

    David

    davidinsd
    August 6, 2007 at 5:48 pm

    Hi Miami,

    My tongue goes numb also. I have IVIG every 2 weeks but if I go longer, it will start going numb as do my hands and feet. Then after the IVIG, my tongue as well as my feet, hands, etc. will become more numb for a few days and then will return to “normal” after 3 – 5 days. Does anyone else who has IVIG treatments get more numb after a treatment? I know how everyone responds differently to different treatments. I also get aspetic meningitis from the infusion. Does anyone else get the HEADACHE? That is really painful. The doctor now gives me a Rx for demoral if needed.

    Good Health to All,

    David

    davidinsd
    March 18, 2007 at 3:04 pm

    Had my first Rituxan on Thursday and no bad side effects. Yippee! I did feel a bit better on Friday than I usually do. Then Saturday, went back to feeling kinda tired again. Will keep posting updates as I go through the next 3 infusions.

    Thanks Everyone,

    David

    davidinsd
    February 28, 2007 at 9:20 pm

    Hello Folks,

    I live in the University City area. Would enjoy getting together with others in the SD/SoCal area. I’ve been a member of the board for awhile but I guess was deleted when the site went down. It is great to have it back! I also have Dr. Sheehan for my neuro. He is trying to get Rituxan as we speak(so to speak) and am hoping for a positive outcome.

    Take Care,

    David