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 #116373
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.
May 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 #116375
…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.
December 12, 2019 at 4:52 am #117334
Hope you are doing well. My brother had a severe case of GBS and spent 6 months in ICU with respiratory assistance.
He was discharged from the hospital august 2018 and still does physiotherapy 5 days a week with very little improvement.He cant stand or close his hands and needs assistance for all his needs.
How long were you actually unable to stand or use hands?
December 16, 2019 at 9:38 am #117348
Hi Elvira. My case is/was right in the middle; not severe, not “minor”, average. ICU 2+ weeks, rehab hospital 6 weeks.
I couldn’t stand at all for 4 months and wobbled badly for at least 2 more. It might’ve gone faster but I had horrible pain from my knees down (where I was paralyzed). The pain faded as I forced myself through it.
My hands were a different story. I was born with a limb difference, so occupational therapy was a challenge beyond usual. I couldn’t do anything with my hands for 2 months. I slid my food toward my face more than pick it up, my fork usually ended up backwards or upside down. It was so hard! Which was a shame because my hospital’s food was fantastic.
One day one of the nurses took lunch break just as I was feeling antsy, so she went with me to the gift shop (just to get away) and as we went we had an inspiration… and picked out a large-print crossword puzzle book. That helped with my handwriting so much! Then, when I went home, I had to improve quickly because my critter needed to be petted, but he nipped because I couldn’t do it right (prima donna crazy bird).
I hope any of that helps.
December 16, 2019 at 10:15 pm #117355
Thank you sooo much for your kind reply. I am trying to figure understand other cases as references since it seems that my brothers case is slower than the ones I have read about.
We are still with energy, giving him the best possible care, nutrition and physiotherapy but any word and advice helps.
December 17, 2019 at 2:23 pm #117356
I had a bad case in 2014, going from healthy to a ventilator in 1/2 day. I was 4-months in hospital, 9-months in nursing home, & 5 months in rehab. Discharged in a power wheelchair. It took another 6-8 months to walk with sticks, which I stopped using about 6 months later. I no longer qualify for PT, so for the last 2-years I work 3-days per week with trainer/s at a private gym. Now days, dead weight lefts and squats with weight help build muscle the most. I am still improving incrementally. I retain some neuropothy in my feet and have minor hand tremors, which I think will stay with me. Stairs are still a challenge, but any kind of railing helps significantly.
December 17, 2019 at 8:37 pm #117357
Wow Richard! Thank you very much for sharing your story. it is great to know that with time and hard work it can keep improving.
December 18, 2019 at 9:33 pm #117361
Elvira – I had EMG tests for nerve conduction at 1-year. 2-years, and 4-years. Most nerve improvement came in the first 1-2 years for me. Not much change after 4-years, however, my Neurologist said there is nothing stopping me from building muscle and that even a small electrical signal can move a big muscle. He also suggested that I lose 20lbs. I said I didn’t think I was overweight. He said “he never suggested that, rather, the same muscle can improve functionality if it has less weight to move around”. Thus, I try to build muscle and keep my weight in check.
December 19, 2019 at 1:27 am #117362
I understand, my brothers last test for nerve conduction was at the year. Might be a good idea to have another although I am not sure if it will really be useful to know…. He had today a therapy in a pool and it is definitely showing some improvement. Do you take nutritional supplements? My brother is very thing so we are trying to give him a good nutrition and healthy diet. He just started on gluten free and sugar free as they contribute to inflammation and takes supplements like Vitamin B, turmeric, CoQ10 and fish oil. I have all my energy focused on anything I can find out to help him on his efforts.
December 20, 2019 at 10:34 am #117365
Elvira – My EMG tests were interesting, but not particularly useful to me. I was on tube feeding for 12-months and lost 50 lbs. Not sure what vitamin supplements, etc. were in the feeding bags. Once I was cleared for liquids and solids, I was given several general vitamin supplements & protein powder. I stayed on that for another year, before dropping down to just 1 common vitamin supplement per day (generic over the counter). Weight went back up 30-40 lbs and I try to stay there. Pool therapy was very helpful for me as well.
December 20, 2019 at 11:49 am #117366
All references are great to know Richard.
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