Full body numbness during crashes

[RHazra]

My son shared yesterday that during his last crash he experienced full body numbness or paresthesia for at least a whole day. He was unable to go to the bathroom and somehow stumbled to the bathroom when he knew he just had to go. Has any one else experienced something like this?

Just a little bit of background: my son has a history of Guillian Barre Syndrome or AIDP which was resolved 90-95% before ME/CFS symptoms emerged. Now he experiences numbness and tingling especially after sleep or naps. However, until now the numbness resolved within 30-45 minutes enough so he can start moving around.

This whole body numbness is new. I would really appreciate your thoughts/ideas/experiences.

 

[Moof]

I've no experience to share, but it sounds as if he needs a neurology consultation to be on the safe side. I know a young dancer who went through GBS, and it was an incredibly frightening experience – I really hope they can get to the bottom of your son's symptoms.

 

[Seven7]

I get those on b12 very low. I also get neuro stuff when b6 is high. Neuro was useless on my case I had to figure out by myself ( even though neuro stuff is common on b12 deficiency and I had history of struggling with low levels).
But yes go to neuro make sure is nothing bad.

 

[Moof]

I get those on b12 very low.

I got a lot of numbness too when I was severely deficient, but for me it was a bit more consistent – it did get worse during crashes, but never recovered to anything like 'normal' on better days. B12 deficiency can cause some scary stuff, up to and including premature dementia, and quite a sizeable proportion of folk with ME seem to benefit from supplementing even when they have no apparent deficiency (though it's also worth saying that some have had negative experiences). I don't think this phenomenon is very well understood.

I'm wondering about a link to GBS. There must be message boards for former sufferers, who might have some experience of the process of recovery? I only know one person who's had it; his recovery took more than two years and involved re-learning all his movement and co-ordination skills, but he's now completely recovered. I'm sure there must be folk for whom it's been more complicated, though, and they might be able to offer support and advice?

 

[RHazra]

I get those on b12 very low.

He has very low b12 but Neuro said to try oral and I don’t think it is working.

I got a lot of numbness too when I was severely deficient, but for me it was a bit more consistent – it did get worse during crashes, but never recovered to anything like 'normal' on better days.

My son has had so many Neuro checks from the best teaching hospitals in the country, MRIs nd EMGs and all of them have said he has recovered from the GBS except for very minimal residual effects. They say that his symptoms are not from the GBS. It makes me really scared — he Never had entire body numbness so I dont know what to make of it. We are having his b12 with MMA tested and I am hoping if the levels are low, his GP will prescribe b12 shots. My son keeps crashing every time he works but will not quit working.

 

[Seven7]

He has very low b12 but Neuro said to try oral and I don’t think it is working.

I use subilingual that works as well as shots for me. Perque hydroxy b12