May 14, 2019 at 3:47 pm #116372Alan BoneyParticipant
My wife was diagnose in Oct. of 2016 with GB. She was treated with IVIG for 5 days and released from the hospital. She fell and broke her leg that same day so PT was delayed for about 3 months. She has been going on and off to PT and it helps some but overall I would say she is only about 60% better in my opinion. We have gone to 4 different doctors and no positive feedback from any of them really. The last doctor she went to said he didn’t know what was wrong with her and told her to come back in 6 months. He upped her from 400 to 600mg of gabapentin 4 times a day. Now after a few weeks she can barely move her RT arm and her trainer says her nerves in her arm are inflammed. I questioned the DR. about the length of time for recovery and asked if another round of IVIG would kickstart her recovery again. He said no that it wouldn’t help. Don’t know what else to do. How long did some of you take for recovery and what did you go through?May 15, 2019 at 7:59 pm #116373ElectraParticipant
I’m sorry that you and your wife have had such a difficult time. I’m curious about why you had to go through so many doctors… not blaming you, just wondering, but others have had similar experiences.
I know nothing about IVIG so I hope someone more familiar can help.
Recovery is quirky. “They” say it should take from 6 months to 2 years, but that is such a generalization (not taking into equation of how severe a case there was, how long it took from onset of symptoms to get diagnosed/treated, general health, etc). And that just refers to getting “functional”; there are residuals (numbness, tingling, others)that can linger.
Is there a center of excellence near you?
Are you on Facebook? Look into GBS/CIDP there. I avoided FB for years… wish I hadn’t.
Best wishesMay 17, 2019 at 10:11 pm #116374GHParticipant
One to three years to reach maximum recovery. Maximum may be less than 100%.May 18, 2019 at 12:00 am #116375ElectraParticipant
…and yet here I am a few months shy of seven years from, well, almost dying (lungs were starting to go into shut-down)… and I am still improving! 3 years after being let out of the rehab facility, my Dad died. (Just a year earlier I had given up using a wheelchair permanently.) I was the only one available and willing to clean up his estate. He and his 2nd wife were hoarders and had a 5-level house they had filled, which left me with a 5-level house to empty. Yes, it took me far longer than I would’ve liked, but it took a lot of effort. Ladders, stairs, hauling trash and recycling, overcoming my fear of spiders… Pretty good physical therapy.
Be realistic, but never say never. I might not be able to run up and down stairs like I used to, but I’m getting more confident.May 24, 2019 at 10:33 am #116386Miroslav PetrovicParticipant
Make sure she doesn’t have CIDP – a chronic type of GBS.June 4, 2019 at 4:05 am #116388AndreaParticipant
Yes it will help. As previously stated, it may be the chronic form of GBS, typically requiring monthly IVIG therapy (I use the word typically to describe the cases I’m aware of). While it’s not a cure it can help offset symptoms. If she responded well to the first round and your physician is not convinced it’s CIPD, I’d ask him to prove you wrong by issuing another dose.
Your wife may also respond better to lyrica or tramadoyl as opposed to gabapentin. In our experience gabapentin did little to offset pain.August 16, 2019 at 1:01 am #117092diane teelParticipant
I was diagnosed with gbs on March 2018 and I am still trying to recover. I still have a lot of fatigue and pain. I take 600 mg of gabapentin twice a day and 800 mg of gabapentin twice a day along with 200 mg of carbamazepine 4 times a day with 30 mg of duloxetine once a day to control my pain. As long as I do not miss any doses it usually will keep my pain manageable.
Some times I will just get up and try to walk through the pain.My therapist would tell me to use it or lose it. I found out I just also have to listen to my body and not get over tried, because that would just make all my symptoms worst.
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