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Help, I'm scared again

PostPosted: May 13th, 2003, 3:32 pm
by Katie
Hi all,

I've not posted in a while, because I was actually feeling better. My symptoms started after I had my child about 8 months ago -- tingling, numbness, and then the twitching started. My first fear of course, was MS, and had the tests done for that and all seemed okay. However, one doctor [my internist] did the wrong thing by telling me a couple of months ago that if it was something to be concerned about, that it would sooner or later reveal itself. Well, I'm very suggestible, and I'm taking that to heart -- especially since it seems that symptoms have come back.

The twitching has come back -- feet, legs, arms -- but that doesn't bother me anymore because I just tell myself it's BFS and it's no big deal.

For a while, my hands were falling asleep at night when I slept [and realized it upon waking], and whenever I mentioned it to the neuro I was seeing, he kind of blew it off. So I decided not to let that bother me, either. Then it went away but came back a couple of weeks ago, but just in the last week it's changed & become more severe. Instead of my hands falling asleep, they're noticeably twitching a lot and the pinky fingers feel like they're out of joint and that I can't move them too well. They almost feel displaced. This only happens when I'm sleeping, and I notice it when I wake up. I have to move them around and give them a few minutes to get back to normal -- it is very very strange, though. Then I'm left with this hand pain that persists usually throughout the day. My whole hands ache, like arthritis, and especially the thumbs.

So I am really freaked out right now about ALS, and I'm often testing my hands for strength a lot. I have been dropping things a lot lately, and my hands seem very tired, but I'm not sure I notice any significant weakness. It's just with this weird thing going on at night with my hands and the twitching that accompanies it, my mind has started going to ALS thoughts. I almost had an EMG done, but cancelled it last month because I was symptom-free. Now I think I should reschedule it.

My question is, will an EMG definitely show ALS or not? I need to put my mind at ease with this, or I know it will drive me absolutely crazy like the MS scare did. The only other thing I can think of is... am I cutting off nerves in my neck or something when I'm sleeping? But why would that affect both sides at the same time?

Thanks for any thoughts -- I really do appreciate this board. It has gotten me through some very anxious times.


PostPosted: May 13th, 2003, 3:51 pm
by Jenn311
Hey Katie...

My mom has gone through something like that for years...her hands and whole arms would fall asleep while she slept. And then they would tingle a while after she got up. Then she found out that she has some kind of problem with her upper spine that was causing a lot of those problems. She still suffers though, and in fact now has continual problems with her hands feeling tingly and painful and hot. But her doctors blew it off for the most part. She did have carpel tunnel surgery on both wrists as well, and though it did help a bit, she is still bothered by it. And it has been years! She was also diagnosed with fibromyalgia, but since she has gone into semi-retirement that has gotten a lot better (she thinks it was caused by the stress).

If it will make you feel better, by all means go and get and EMG and talk to your neuro about your fears and the symptoms you have now.
As for BFS has come and gone over the years. I think if I go through a particularly stressful time it comes back. I have never had an EMG, nor have I seen a neuro, but am thinking presently that maybe I wouldn't feel so anxious if I finally broke down and went. I bet you are fine. I know what it is like to be stressed about your health robs you of precious time, that's for sure.
Take care! Jen


PostPosted: May 13th, 2003, 5:24 pm
by Katie
Jen, thanks for your reply.

I did wonder if it had something to do with my spine, because it is odd that it really only happens at night. Then during the day I just have pain my hands and wrist. It's so frustrating.

I've decided I might go and have the EMG anyway, though.

Did anyone ever suggest a special sleeping pillow for your mother? I wonder if anything can be done.



PostPosted: May 13th, 2003, 6:39 pm
by Jenn311
Hey Katie...

My mom doesn't sleep with a pillow...maybe that is part of her problem. I think it is because of degeneration of the cartilage btw. the seperate discs in her spine...I think she gets some kind of shot in her spine from time to time that provides some relief, but that in itself is somewhat unpleasant I'm sure. That's all I know. Are you diabetic? I have heard of peripheral neuropathies in people that are...also in people that aren't...but that's rare.
Good luck with the EMG...let me know how it goes!

PostPosted: May 13th, 2003, 8:28 pm
by Nole
That happens to me alot when I sleep I dont worry about it though it may be the way you are sleeping (I sleep on my hands and cut off blood).


PostPosted: May 16th, 2003, 8:53 pm
by Katie

Do you just get the tingling sensations in your hands, or do you get the joint pain, too? I was getting the pins & needles/tingling for a long time, and I pretty much decided not to worry about it, too. But when it changed to this out of joint feeling and pain, I became more worried.

I went to a neuro today and he found nothing but wants me to do an EMG. He mentioned polyneuropathy, but I refuse to "go there" in my mind.