azgold
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November 9, 2015 at 8:53 am
When I was diagnosed, I asked the doctor specifically if stress contributed to my getting GBS. He didn’t hesitate in saying that yes, it did.
Almost makes me scared of stress yet no one gets through life without some. I’m referring to the bad kind.
@Matt W, I think engaging in activities what we enjoy to reduce cortisol production is an excellent idea!My kinesiology doctor also recommends Qi Gong to relax and have better energy flow.
November 9, 2015 at 8:48 amI tried ALA but I got such heartburn from it. Is that strange?
November 9, 2015 at 8:47 amI had a big problem with memory (and other basic brain functions) for the first year or two but things have righted themselves, mostly.
Can’t see that type of problem cropping up after the fact but I’m not a doctor, nor am I an expert. Will be interesting to hear if you discover differently.
November 9, 2015 at 8:43 amI still get very numb fingers and toes in even cool temperatures, 3 1/2 years after diagnosis. I think it’s pretty common with GBS’ers. Our poor nerves have been through a lot. I’ve no idea though, whether it’s a sign of nerve damage or nerve regeneration. I’m hoping for the latter. 🙂
September 30, 2015 at 5:24 pmCould it be an indication that a nerve is coming back to life?
I had GBS and remember the teeth on one side of my mouth doing that. Felt like an electrical current buzzing through. Hurt, too – like having 8 toothaches all at once.
If this is the case, then the sensation is a good thing.
September 30, 2015 at 5:21 pmHi, Daurkin, welcome.
Most of us here had either IVIG, or plasmapheresis. Doesn’t cure GBS but stops its progression, reducing the potential damage. At least, that’s what I’ve been told.
All your residual symptoms sound typical, although after five years, I would have hoped they improved. Are you still engaging in physio?
The nerves need to be stimulated back into action, if possible. Right now, they can’t communicate with your muscles. I was told that in hospital but was also told that the damaged nerves would regrow rather than repair, so I’m not sure about that. The kinesiology/accupressure/chiro that I am currently getting (I’m 3 1/2 years) has not helped greatly yet but I think it will because my muscles are plenty sore after an appointment. To what degree, I can’t say, of course. I’ve only been going for the past month. If you have someone like that in your area, maybe look into it. Don’t expect an instant cure, though.
I’ve also started taking 2,000 mgs of Vitamin C daily – 1,000 morning and night. It helps heal cells, etc., so figure I can’t wrong there.
I have tried a couple of other things, i.e. Lecithin and ALA that others in this forum have tried but they didn’t seem to help me. Might be worth it to see if they work for you, though. Take a look through the GBS adult threads, see if the info there is helpful.
Try not to get too discouraged.
August 28, 2015 at 10:08 amYour sister will need to have a lumbar puncture (spinal tap) to confirm a diagnosis of GBS. Finding a doctor familiar with this stuff would be ideal for her situation.
August 28, 2015 at 10:05 amEngaging in P/T and O/T is really, really important.
As JK said, do it on your own. I had initial physio and have been doing it on my own ever since. It has worked really well but plateaus can last for months. Also, improvement can be sooo slowly incremental that you don’t notice that you’ve progressed. Someone who doesn’t see you regularly may remark about how much better you seem and you hadn’t even noticed.
Sounds like you’re still pretty restricted but try to do as many normal things as normally as you can. That has helped me beyond measure. It’s also good for your morale, once you find things easier to do.
Re $$$…again, same as JK said. I’m in Canada, we have disability and I have a friend in Michigan who also got it stateside. Have you applied yet? You certainly sound eligible.
August 28, 2015 at 9:57 amI’ve only had one EMG, about 1 1/2 years after getting GBS. They inserted thin needles into my most damaged areas. Wasn’t too awful until they got to my face. That was the most uncomfortable. I can’t think of any way to improve the experience other than the ones you mentioned but it would be great if someone has found some other little ‘trick’ to make it easier.
On the bright side, you have a starting point, something I didn’t have. They wouldn’t give me an ENG in the hospital because they thought it would be too painful, so the doctor who finally did it had nothing to compare the results to in order to judge my progress. Maybe a silver lining for you?
August 28, 2015 at 9:47 amI also had the band. Mine was (and still is but much better now) around my ribs/diaphragm and made breathing difficult and coughing impossible. I called it my boa constrictor. 🙂
I think it’s pretty common. It does get better with time. I’m now 3 1/2 years past my GBS diagnosis and it is finally almost not noticeable at all.
My case was pretty severe, so you may improve much faster. I was also 57 when it hit me.
Welcome to the forum, by the way!
July 20, 2015 at 10:36 pmJust read the article that GH linked to – wow! Those poor kids. It sounds pretty awful. Hope they are able to find a treatment for the virus.
July 20, 2015 at 10:32 pmSorry, GH – wasn’t trying to be a fear monger. Was curious why such young kids were suddenly having this problem.
July 20, 2015 at 10:26 pmGH, you’re braver than I am. I was repeatedly asked by hospital staff if I had had a flu shot, was I sure I hadn’t?
Regardless of whether it is considered safe or not, I am not willing to risk a relapse. I don’t have another one of those horrors left in me.
Prior to GBS, I never got sick. Hadn’t been to the doctor in about 15 years, last had a bout of flu in the ’90s. In the past year, I have been exposed to people with colds and flu (not on purpose) and so far, so good, back to not catching bugs that are going around, so I’m not concerned about that.
As bad as flu is, at least it is short-lived and doesn’t leave you paralyzed.
I’m only speaking to my own fears and experience, not trying to sway anyone.
July 15, 2015 at 7:57 pmAhh, GBS…the gift that keeps on giving. 🙂 Wish it could be returned or exchanged.
July 15, 2015 at 7:47 pmSure sounds like GBS, doesn’t it? And, umm, the definitive screening for GBS is a lumbar puncture, is it not?
Did these poor kids have their vaccinations before the onset?
