Ivig?

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    • #9608
      Anonymous
      Inactive

      I was diagnosed with a fairly severe case of GBS last May 17th. I’ll never forget that day. Any way 7 months in hospital(s) and 2 in a rehab facility and now back home still in rehab(out patient). I can walk now using AFO’s and a single crutch. Use a w/c for long outings. My only remaining pain is in my hands and feet and that pain is substantial. I’m told I had an IVIG treatment and followed by plasmapheresis. Like many of you I had nearly full paralysis for a time.
      My question(s):

      It seems that some go thru several IVIG treatments. My neurologist has never mentioned additional treatments. Does it make a substantial difference?

      My hand pain/numbness gets pretty severe at times and makes the simplest task nearly impossible. I take 1200mg of Gabapentin 4 times a day. I’m told that’s a substantial dosage. What might be alternatives?

      Thanks
      Wayne

    • #98714
      Joe Martin
      Member

      I had the ivig treatment which didn’t work, so after the 21 day waiting period, they dragged out the blood washing machine ( plasmapheresis ) , of which I received 5 or 7 treatments. I went into the coma before the first ivig and didn’t come back out of it till the second to last plasma treatment. I never got any more ivig’s since then. I am 5 years out with the only main side efect is tingling, numbness, or lack of feeling nerves in both feet from the ankle to the end of the toes. The pain isn’t all that bad, so I take no medication for it. My main drawback is the loss of sense of balance, due to no feeling in the feet to tell my brain whether I’m leaning forward or back. Since no two people are the same with this as to recovery time, percentage of recovery, amount of pain, effective medicines, etc., all I can say is keep comparing notes on this forum.
      Good luck on your recovery.

    • #98719
      Anonymous
      Inactive

      There is a pretty good discussion about pain on-going in the Main Forum. It is called- Information Sought On Pain (Multi-page thread 1 2 3) by
      istaroaz it’s about 4 down from the top right now.

    • #98721
      Anonymous
      Inactive

      For what I understand, long-term or multiple courses of IVIG is usually reserved for patients with CIDP. Since GBS is acute onset damage instead of ongoing damage, those of us diagnosed with GBS usually only require the initial IVIG treatment or plasmapheresis. You would need to speak to your neurologist about additional IVIG’s or get a second opinion.

      Tonya Correll
      GBS May 2005

    • #98726

      Other than your pain, has any weakness, tingling, ability to do things decreased? If not, then it is probably gbs and that would be why the doc has never mentioned it. If you do feel you are getting worse, not related to the pain, you should convey this to your doc to further investigate through diagnostic criteria that would compare initial ncv/emg to new ones to see if there is any diagnostic documentation that would support a new demylination indicative of cidp.

    • #98728

      BTW that is a substantial dose of the neurotnin, maybe if it is not helping you can ask for lyrica to be added.

    • #98741
      Anonymous
      Inactive

      I am very grateful for all the responses. I went into a very deep coma I’m told about 3 days into all of this. Coma lasted 2 weeks and did not regain consciousness for another 6 weeks. I’m getting better, just impatient I guess. Hand and foot pain gets wearisome. And yes on the weakness although I guess all that came from inactivity while being out. I was very strong and fit as a result of near 20 years of climbing and maintaining communication towers,(cell, radio and TV). Lost 45lbs while out. Heck of a way to diet.

      Wayne

    • #98756
      Joe Martin
      Member

      In regards to being in the coma after coming down with the GBS, it was a medical induced coma. They put me into the coma so they could insert the trache, and although I couldn’t move much at the time, they did it partly as pain medication. The way it was told to me , they gave me 5 IVIG’s and brought me partially out of the coma, which probably caused the nightmares,so when I showed no progress, they put me back into the coma for the twenty one day wait before starting the plasmapheresis.

    • #98758
      Anonymous
      Inactive

      My coma was not medically induced, my GP and neurologist don’t have a conclusive answer as to why it happened. I went on a vent prior to the coma. But what happened and why is not important any more other than knowing if I can do anything to insure it never happens again. I’m just thankful to still be here, and if I can get the pain to ease up a bit I’d be really thankful!

    • #108950
      Anonymous
      Inactive

      Hi WBowyer,
      I am so glad that I have found you.. I have been searching for the answers in a long time. My father has been diagnosed with GBS – Miller Fisher Variant Plus since August 10, 2013. He was given two courses of IVIG with one week distance between the two courses. On Sept 3, He suddenly had a cardiac arrest and was in a comma (no concience + eyes are closed + no movement) until Sept 28. Then, he started to open his eyes, moved his legs and right arm but I can’t say that he’s consious.
      The Neurologist said that he can become forever in a vegetative state because the comma lasted for 25 days. But when I read your stories and assumed that you typed it yourself, I am thinking differently possitive.
      Can you please share more about your stories when you were in a comma. What did you feel, and how did you recover stage by stage. Did you have an additional batch of IVIG? How’s your heart rate and temperature?
      Please drop me an email at anne_red@hotmail.com if you have time.. I will be very gladly to chat with you..
      Please help me as my Father is ALL I have…

      Thank you very much, Anne Darmawan

    • #109126
      Anonymous
      Inactive

      Hello Wb and All:

      1200 MG of Gabapentin 4 x a day = 4800 MG total/day. There have been patients here taking as much as 6000 MG/day in the past. But 4800 MG, because of the breakdown factors, should be of no concern as long as you can tolerate the dosage and is prescribed by your doctor.

      Dawn mentioned Lyrica as a possible pain reliver for you. 150 MG of Lyrica may do wonders for pain…it is a great pain killer. You may want to ask your doctor about Lyrica.

      Best regards.

      Jethro

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