Mark Robichek

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  • Mark Robichek
    November 13, 2018 at 5:38 pm

    Hi, Ann-Marie.

    My doctor is still trying to work out the correct IVIG dosage and frequency for me, but I do have some experience that might be relevant to you.

    After I’ve gotten high-dose IVIG treatments (lasting 2-3 days), I have typically found that my strength and balance start feeling normal after about 7-10 days. The tingling has been unpredictable, coming and going as it pleases. And as for the autonomic reflexes (i.e. when the doctor hits your knee with a mallet), that may take 4-6 months to come back. The trick with CIDP is to find the maintenance (smaller) dosage that keeps the symptoms from returning before you get treated again.

    Good luck to you (and all of us)!

    Mark Robichek
    August 12, 2018 at 1:52 am

    Thanks, Greg! That’s a heckuva story. I hope that we’re both on the road to recovery.

    Mark Robichek
    August 7, 2018 at 1:16 pm

    After my wife & I decided that my primary neurologist could have been better, we decided to make an appointment with the Top GBS/CIDP specialist in Northern California. We met with him last week. After he reviewed all of my EMG test results and performed some physical tests, he made this shocking announcement: He wasn’t sure that I even have CIDP! He told me to stop taking the Prednisone immediately (there shouldn’t be any side effects since I was only on the drug for 2 weeks). He felt that my EMG results may have been biased by the fact that I was getting IVIG for my primary immunodeficiency, and that may have clouded my results. We may yet discover that my latest attack may in fact be CIDP, a rare second attack of GBS or perhaps even something else TBD. Details to follow…

    In the meantime, after stopping the Prednisone, I have noticed (possibly coincidentally) that I’ve developed some open sores in my shins. I have also noticed that the tingling in my hands has been coming and going. Has anyone else had similar symptoms, either while taking Prednisone or after stopping the drug?

    Thanks!

    Mark Robichek
    July 25, 2018 at 12:40 am

    Kathy,

    Thank you so much for sharing your story in such great detail. The more I read, the more I can anticipate possible issues. I started taking Prednisone on July 16 and received a high-dose IVIG infusion on July 18-19. As of today, I’m already feeling much better; I’m stronger, and my walking is almost back to normal.

    I hope I’m one of the lucky 85% (that’s the success rate that my neurologist has given to CIDP patients responding to Prednisone/IVIG).

    Thanks again, and continued good luck to you!

    Mark Robichek
    July 17, 2018 at 12:22 pm

    Thank you very much, Jim! Many of your links were very insightful. I appreciate you doing the research on find them for me.

    Mark Robichek
    July 16, 2018 at 10:57 am

    I was happy to see this post! I had what was thought to be a second attack of GBS in March 2018. My diagnosis was switched to CIDP after symptoms continued for over 4 months. I have been sweating more than ever before in my life, and I was unaware of any connection to my condition before.

    It’s nice to read that the sweating may actually be a sign of healing!

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