Reply To: After living with GBS for 5 years, I just found this site

September 30, 2015 at 5:21 pm

Hi, 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.