Has anyone had a recurrence in their symptoms. I have been in recovery since Feburary getting back to running and gym. But two weeks ago symptoms returned , weakness in legs arm. Burning sensation and pain in lower back. Dr states may have over did it and caused past nerve and muscle damage to flare up. I have read where some patients do have recurring GBS , any thoughts. Thank you
I have not heard that others have recurring GBS - however, I do recall when I was in rehab, they told me to be sure I do not over exert myself - but that was just in rehab - not after I came home.
You may have CIDP (Chronic Inflammatory Demylinating Polyneuropathy). The symptoms are very similar, but the big thing is that (as the name implies) it doesn't really go away. I suggest asking your doctor about it, and if he's not familiar with it, go to a specialist.
It is very early days for you yet. Myelin takes YEARS to regenerate, but it DOES get better. I have CIDP and only now, after 20 months am i seeing a vast improvement. Compared with a year ago i am in heaven! Pain, weakness and burning is only slight now. So there is light at the end of your tunnel, just take it easy and slowly and pace yourself regarding exercises. Running and gym are excessive in the early recovery days. Controlled stretching is good. Take lots of vitamin supplements and also Glyco support vitamins to build the myelin. Wishing you a speedy and complete recovery. Jacqui
Thank you to all for the info.
You could have CIDP which in that case, it can recur and does so every now and then. I have been symptom free for almost 9 months now so my doctor doesn't think my GBS will recur but chronic GBS will. The good thing is that she told me if I experienced a recurrance or a tingling in my toes/feet or numbness to get to her quickly as there are medicines I can take to keep it from getting full blown GBS. So my advice, go to your neurologist, get an EMG to see if its just regular soreness or if muscles are actually misfiring due to the sheath being compromised again. Hopefully it's just as your doctor says and overuse. But.... we will always be overly cautious with our bodies from now on won't we??
Thank you ,yes I am going to the neuro next week to discuss CIDP
I’m sorry you had recurring symptoms. It’s been about a year since the onset of GBS for me, and my symptoms are worse now than when they began. The burning in particular has been my demon, though the foot pain which always feels like I’m walking on gravel rocks while barefoot is constant as well. I would say don’t push yourself too hard. I have and pay for it for days to come. Pay heed to "The Spoon Theory"
Well it happened to me, back to back. I had to go back to the hospital for 6 more ivig treatments and weeks of rehab. My family dr said in med school his buddy had it twice just like me, it so crazy this Gbs. I run into so many people who have had it or know someone who’s had it, to be one in a 100,000 who get it it sure seems like more than that.
I hope you are feeling better. I have read the previous posts and felt identified with you and everyone else. I also feel recurring cramps, numbness and lack of strenght. As others say, Myelin does take a lokg time to recover. Let me tell you about one fo my experiences.
Searching on the Web, I encountered some information about Nucleo CMP-Forte (uridin-5). It is mainly used for diabetic pain. However, it does help to recover myelin. I started taking it about 15 days (2 pills, twice a day - my aunt is a physician; she gave me the advice) and noticed that some of the numbness disappeared. I was also able to workout with resistance bands, which helped my strenght. Then, I dropped the dosis suddenly for 2 days, and noticed that some tickling re-appeared. However, as I recall, I did exerted myself when exercising (which was a mistake combined with dropping completly the nucleo cmp).
Then, I started taking lots of vitamins again, as well as soy lecithin, zinc, echinacea. I feel better after my little "experiment".
I suppose, one can't take that kind of medication (nucleo cmp) indefinetely, that's why I dropped it. If you could try it by yourself or ask your neurologist, he might give you a proper advisem regarding dose.
Hope it helps