Finding best GBS treatment
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May 29, 2006 at 8:16 am
My husband was recently diagnosed with GBS. This has all happened very quickly and I was wondering if there are resources that I can use to help me find the best treatment. We are from central PA. He is currently hospitalized recieving IVAG treatment.
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May 29, 2006 at 9:42 am
Here are three articles that discuss options for GBS treatment.
Treatment of Guillain-Barre syndrome with intravenous immunoglobulin
[url]http://neurology.org/cgi/content/abstract/51/6/S9[/url]
A randomized trial comparing intravenous immune globulin and plasma exchange in Guillain-Barre syndrome. Dutch Guillain-Barre Study Group
[url]http://content.nejm.org/cgi/content/abstract/326/17/1123?ck=nck[/url]
Intensive management and treatment of severe Guillain-Barre syndrome.
[url]http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=93178101&dopt=Citation[/url]
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May 30, 2006 at 2:00 am
Hi and welcome,
IVIG is one of the best treatments. Have a look at the links above also to explore all areas. Best wishes to you and your husband.
Debbie
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May 30, 2006 at 7:46 am
hi rothsnid, welcome to the family. since your husband has a fast dx and is receiving ivig, the only other thing to be concerned with right now is making sure he gets physical therapy now also. just passive exercising helps keep the muscles from atrophying and is good for the mind/muscle connections to engage. ask any questions you have and keep in touch with his drs. you are his advocate until he is better. make sure he is getting everything he wants, and needs medically. gbs stands for getting better slowly, it will take as long as it takes to get over this stuff. try to keep your husband informed of what is going on and updated on current events. take care of yourselfalso, he will need you healthy and rested also.:)
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May 30, 2006 at 7:08 pm
IVIG !!! OK now that I have that right and GBS sure is easier than trying to pronounce this awful syndrome. It’s been one week since he was hospitalized and will recieve his fourth treatment tonight. Here is my frustration, the Drs still aren’t 100% SURE IT IS gbs BC OF THE emg AND LUMBAR PUNCTURE RESULTS!!!!!!! Is he responding or is it my imagination and wishful thinking? He isn’t getting any worse, his legs,arms,speech/chewing are affected and he is in such terrible pain, recieving Morphine every 2 hrs. w/ Percocet in between, Ambien to sleep and Neurontin.
Is it GBS? Can the EMG and Lumbar Puncture be inconclusive? Can Prednisone throw off these results? He is a long term Prednisone user bc of severe Asthma.
Any advice?
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May 30, 2006 at 10:01 pm
rothsnid,
you said the magic words, he is not getting worse. recovery will flow later. prednisone is counterproductive to gbs but if he must have it then he must have it.
take care. be well.
gene gbs 8-99
in numbers there is strength -
May 31, 2006 at 1:21 pm
Just took a breather from the hospital and it looks like a rheumatologist is sending him for a muscle biopsy. Anyone have one of those?
~Rothsnid -
May 31, 2006 at 6:37 pm
rothsnid,
nerve biopsy to help Dx gbs is not necesary & can cause pain for much too long of a time. pass on it.
muscle biopsy; request needle not open biopsy. if painful afterwards, ask if another less painful procedure is available. [url]http://www.rheumatology.org/public/factsheets/myopathies_new2.asp[/url]
take care. be well.
gene gbs 8-99
in numbers there is strength -
June 2, 2006 at 7:41 pm
Hello friends,
I guess I’ll say goodbye b/c my husband does not have GBS, results from a blood test sent on May 25th determined he has Vasculitis which is extremely rare and hard to diagnos. He will undergo Radical Steroid therapy and hopefully find relief in the near future.Thank you ALL for your responses and your support. Having been educated about GBS has opened my eyes and heart to a special group of individuals that are truly couragous and heroic.
Keep up the love and support.
~ Rothsnid
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June 2, 2006 at 8:43 pm
[LEFT]Best of luck to you and your husband. Come back anytime. Take care.
Jerimy[/LEFT]
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June 3, 2006 at 11:19 am
Rothsnid,
Come back once in awhile to give us updates on how your hubby is doing.
Take care of yourself and my Best Wishes for him.:) 🙂 -
June 6, 2006 at 11:27 pm
care is most important.
prevent of complications.
apply some exercises to him everytimes , when you visiting him.
you can ask the nurses or physiotherist to teach you -
June 7, 2006 at 3:43 pm
Hi I’m new to this forum as well. I’m from central PA. and I’m recovering from GBS. I was hospialized in Hershey Med. Ct. and they did a great job with me. They work with you there. Its going to take time. You have to be patience and work back.
See you and praying for you and anybody that has this decease.
Ron
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