5 replies to this topic

[Nantzie]

A few months ago, before I found out about celiac, I woke up out of a sound sleep to the phone ringing. I jumped out of bed, and my legs collapsed right out from under me. I just dropped like a sack of potatoes. I thought at first that my legs were just asleep, but once I dragged myself back into bed (using nothing but my arm strength), I felt my legs and I could feel everything, and I could move them, wiggle my toes, etc. I tried to stand up again and I just didn't seem to have any muscle strength whatsoever. It was like standing on cooked spaghetti. It was about five minutes before I could stand up. At the time I wrote it off as being sleep paralysis, where sometimes people wake up and can't move for a few minutes because their bodies still think they're asleep.

It hasn't happened again, but now, knowing about the neurological aspects of gluten, along with already having balance problems, it just makes me wonder.

Has anyone here had problems with something like this?

Nancy

[RiceGuy]

Well, I have recently been having pain in one leg only. So much so that I could not stand on it. It was also very weak, but since you didn't mention extreme pain, I'd guess it's not exactly the same thing. It would spasm at the slightest change in pressure as I tried to get around. There was noticable numbness too, but not the entire way down - mostly above the knee. That lasted for quite awhile. Almost a month! Ever try walking around on one leg?

Now it is a lot better, but still not very good. There is residual pain in one spot of the knee. Both ankles hurt all the time, but I think that's just because of the way I had to drag myself around for so long.

I still don't know what brought it on, so I'm proceeding cautiously.

[ravenwoodglass]

A few months ago, before I found out about celiac, I woke up out of a sound sleep to the phone ringing.  I jumped out of bed, and my legs collapsed right out from under me.  I just dropped like a sack of potatoes.  I thought at first that my legs were just asleep, but once I dragged myself back into bed (using nothing but my arm strength), I felt my legs and I could feel everything, and I could move them, wiggle my toes, etc.  I tried to stand up again and I just didn't seem to have any muscle strength whatsoever.  It was like standing on cooked spaghetti.  It was about five minutes before I could stand up.  At the time I wrote it off as being sleep paralysis, where sometimes people wake up and can't move for a few minutes because their bodies still think they're asleep. 

It hasn't happened again, but now, knowing about the neurological aspects of gluten, along with already having balance problems, it just makes me wonder. 

Has anyone here had problems with something like this? 

Nancy

<{POST_SNAPBACK}>

Yes,
Fortunately it was only one leg. Sometimes I used to have to use my hand to move my leg, made it a real pain (and probably dangerous) to drive. I used canadian canes for a few years prediagnosis because of this and the ataxia. It also made them think MS, but they ruled that out. After about 3 months gluten-free my neuro symptoms were pretty much gone, unless glutened. I even have reflexes now, something I hadn't had since childhood when I first started to drag my leg. I don't know if my response was typical, ie. basic full remission, but I hope it'sa the same for others. Celiac can cause some nasty neuro problems, I was very happy when they went away.

[danikali]

YES! And it's scary isn't it????? There have been a couple of times where I get up during the night to go to the bathroom and as soon as I put any weight on my legs when I get up, I FALL! It probably looks funny but it is NOT FUNNY AT ALL! It's like I'll get paralized for a little bit..........I'm glad to hear I'm not the only one who's had this problem!

And also, with those of you who have pain in only one leg, I GET THAT TOO! (Sporadically)........It's like, it will start out with a little cramp, and before I know it, my whole leg is throbbing! It's usually my left leg, but a couple times I have gotten just the "cramps" -not the whole throbbing thing- in my right leg too. But it's only one leg at a time.....

Scary stuff!

[Rusla]

I had that happen at work, before I found out any of this. I went to stand up and I couldn't and had extreme pain in my hips and legs. Sometimes I will get it in just one leg. But for the very short time I was gluten-free I did not have even the pains in my legs. Now, this week it is back with a vengence because I have to eat gluten this week.

[jerseyangel]

I have not had my legs go out, but at times they feel so weak that I've thought maybe they would. Also, I get hip pain on the right side while laying in bed that is so painful that its hard to change position. Thankfully, these things do not happen too often.