Guillain-Barre Syndrome Support Group Intl

6 recommendations and reviews from 3 people

• Referral from June 25, 2014
  

  Wendy V. asked:

  Interested in hearing from CIDP afflicted. My brother (63) has it and was diagnosed about 7 years ago. Had IV gamaglobulin about 5 years ago and nothing since. Won't go back to a Dr. since one told him he was crazy when he tried to discuss it with him. He is in constant pain and says his feet are either burning or icy cold. Is getting weaker and weaker and now is unable to go out of the house any more. He is still mobile but has been taking painkillers for so long that his short term memory is gone. I am trying to do my best to help him but would like some input from someone as to what I can do to help him. Have been in touch with a local chapter and they are sending me information and have given me names of Dr''s who specialize in CIPD but my brother will not let me take him as he says he was told nothing could be done and he is dying. Please message me if you have any info or can offer any helpful suggestions. Thank you.

  

  Barbara B. replied:

  See another doc. Check gbs-cidp.org for the Centers of Excellence, to see if one is near him.

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• Referral from April 9, 2012
  

  Clea C. asked:

  Hello all! Hoping I can get some information from the group. Husband was diagnosed with GBS about 6 months ago and finally changed to CIDP. Last couple of days he has been in SO much pain. Is there something we can recommend to his Dr to help? He is going to a Muscular-Neurologist in Dallas, but I'm not sure how much they really "know" about this new syndrom. I've just discovered this page, so is there a FAQ's page or something that I can also be referred to? Thanks all!

  

  Andrea D. replied:

  Hi Clea. I am about 4 months into my battle against GBS. The foundation's website is gbs-cidp.org and there is a wealth of information there. In terms of the pain, if it is the painful tingling with the "shocks" on top of it, I take gabapentin (generic form of Neurontin). I started@300 mg 3 x/day and am slowly increasing to as much as 900 mg 3 x/day if that's what I need to get control of it. It's worked pretty well for me and others here. I am also on Tramadol and oxycodone for pain, but that is because I have a previous back injury. There are several people with CIDP (including some who had GBS and then got "upgraded") who are really active on this page. I'm sure they may be able to shed a more-informed light on things. Welcome to our "family" and thank you for all your work as a caregiver. Now that I am in recovery, I am so amazed at everything my husband did and still does to take care of me and help me get to where I am today.

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Recommendations from GBS-CIDP I.

• Referral from July 16, 2014
  

  Linda S. asked:

  Hello all , I just found you. We have had a very rough year and looking for some support. After a couple of months my husband was diagnosed with GBS last July. He was treated with an IVIG treatment, which worked wonderfully. He had a recurrence in November-December and had another IVIG treatment in Decemeber 26th- jan 2nd. It seemed to help, not as much as a drastic change, but again symptoms were not as bad. February 1st he started predisone and azathoprine. it seems the weakness is now moving through his body, and all the doctors want to do is increase the predisone. Has anyone gone this treatment route? how long did work. should we push for the IVIG again? any suggestions would be wonderful

  

  GBS-CIDP I. replied:

  Hi Linda, we would be happy to offer our resources. You can call the Foundation directly at (610) 667-0131 or by email : info GBS CIDP Support Group Philippines

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• Referral from May 16, 2013
  

  Diane N. asked:

  It's wonderful to read all the positive and supportive comments. A lot of you have treatments and doctors who work with you and can get advice from. Not to be negative, but I've been dropped out in the perverbial ocean to sink or swim with the sharks!! The last neurologist I saw a couple of years ago told me not to come back because I refused to let him do "experiments" on me for a paper he was writing. Another neurologist told me nothing could be done because I've had the CIDP for so long. I'm glad for you all, but at the same tome am wondering what I'm doing wrong? My family doesn't even acknowledge it anymore. Maybe I hide it too well. I just don't know.

  

  GBS-CIDP I. replied:

  Diane, sorry to hear about all your problems. Please register with the Foundation and we can provide you neurologist referrals and information about our Centers of Excellence. You can register at www.gbs-cidp.org or contact me directly at susan.farrington@gbs-cidp.org or 610-667-0131.

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• Referral from November 6, 2012
  

  Cindy D. asked:

  anyone know where some (caregiver...etc) can get info on the disease so they understand the ups and downs

  

  GBS-CIDP I. replied:

  Please register on our website www.gbs-cidp.org at "Contact Us" and we will send a package of information including local contacts if available. Or you can contact me directly at susan.farrington@gbs-cidp.org or 610-667-0131.

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• Referral from February 4, 2012
  

  Eileen D. asked:

  Has anyone been to a sub-acute facility for short term care/ therapy in Westchester, NY that they can recommend?

  

  GBS-CIDP I. replied:

  Hi Eileen, the decision to enter a facility is based on your medical situation and what is best for you as an individual - although I don't have any recommendations for facilities, if you reach out to the Foundation at susan.farrington@gbs-cidp.org or call 610-667-0131, we can provide additional information.

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