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Please help me!!!!!! Anyone/everyone

PostPosted: December 13th, 2002, 12:03 pm
by Leah
My story is so similar to many of yours. About 2 months ago I was sitting typing and had a sudden pain flashed up my left arm. I was un able to move it . Both hands became numb with pins and needles. This last ed about 20 minutes. A few day later i noticed i had a strange pressure in my check bone. Somewhat like sinus pressure but a little different. I reached up to remove glasses tha were not there. The pins and needles began again in hands and at times feet. This still continues.

A few days passed and I noticed twitching in my left thigh. It lasted only a few seconds. Then it appeared on the right side. Within days I was twitching EVERYWHERE!! Legs, arms, feet, back, buttucks, back ,tongue, stomach. Even places I did not know one could twitch in!!!( female areas) So I jumped on the web, looked up "TWITCHING" and what appears ALS......

Then I freaked, Couldn't eat, sleep, work, or even breath at times. I spent days crying, trying to decide what would happen to my children if I died. Convinced I had ALS. Read about bulbar and those symptoms started....
I spent days looking at my tongue, loosing my flipping mind!!!!

My right arm starts feeling buzzy when I type or use the mouse. No other activity causes this. My hands always have that pin and needles feeling. During Thanksgiving I was brushing my hair and when I bent my head to the side I started having an electricla charge in my leg. When I held my head up it stopped, when I put my head back down it started back.

So now I am twitching, buzzing, have pins and needles feeling in my hand and feet. I have noticed NO strength loss at all. I can walk on my toes and heels. I can hold my fingers and toes firmly down with out being moved. I can stand from squating 1000 times.

Went to see GP. She checked my relexes, looked in my mouth, tested strength. She acted like I was crazy and firmly told me I "do not have ALS" She said ALS does not have sensory problems( is this true) She thinks it is nerves and anxiety. Told me to take b complex and come back in one month. For about a week after seeing her I felt very relaxed. Actually, the momnet she said "you do not have ALS' i calmed and felt much better. The twitching seemd to slow some and all those imagined bulbar signs disappeared. Mailny the " I am truly dieng feelin g left me,

:cry: Then over night the twitching picked up. I got back on the F***ing web. Looked at ALS sh*t and now I am loosing my mind again. I am terrified.
Christmas is coming and I do not want my children to see me like this. I am so afraid I can barely breath right now.

Anyone, everyone please help me with some words of knowledge or comfort.

Blessings and peace,

PostPosted: December 13th, 2002, 1:17 pm
by Nole
First thing, realize you are not alone and we are here for you. You need to figure out how to relax yourself. I think you are totally freaked out and are having symptoms of anxiety on top of the BFS symptoms you seem to be having. Many of the symptoms you are having seem to be BFS related, and it does not sound like you have ALS. You would have profound weakness and would be twitching in one spot until that muscle died. Im sure your doctor knows what they are talking about and believe him when he says YOU DO NOT HAVE ALS. Now you need to understand that you are probably going to twitch for awhile and accept that. Some days will be better than others, but over time and remembering that you are OK it will get better. And stay off those awful websites!!! I felt the same way you did, I have been twitching for 7 months but dont even notice them now and it took me about 3 months to calm my body down and after that it has gotten so much better. Some days I dont twitch. Another thing is you might want to make sure you dont have any piched nerves that may be causing some of your twitching or pins and needles, but most likely it is BFS. You need to try and control your thoughts and realize that life is worth living especially for your children. We dont exactly know why this happens to us but the twitching and the sensations are something you are going to have to learn to deal with for the time being. Remember you are OK, get your anxiety under control, stay positive, take vitamins, read inspirational books, exercise, go for massages, and live your life. We are here if you need us. Welcome!!

PostPosted: December 13th, 2002, 1:58 pm
by Wittesea
I think that the most important thing that you can do right now is to stay far far away from the ALS sites. Delete them from your bookmarks (or favorites) folder.

When I just couldn't help myself and felt like I needed to keep going back to those sites I deleted them all from my computer and I made a deal with myself. I tiold myself that anytime I start to get scared again that I have to go to one of the BFS forums FIRST and type out my fears. I also told myself that if I ever went to any site that had information about ALS (or any other really bad disease that I don't have) that I would put $10 in a jar. I hate losing money, so putting the $10 in a jar really is the thing that kept and keeps me away from those sites.

By the way the jar currently has $50 in it, I did goof a few times, but I keep the jar on a shelf right above my computer monitor as a reminder to KEEP AWAY from ALS sites. And it seems to work right now, I haven't looked up ALS in several weeks. I also decided that I am donating all the money in the jar to a local agency that helps people with disabilities. (the whole jar idea doesn't work if I get to eventually keep the money) :)

From what you typed in your post you sound like a very typical BFS twitcher, your symptoms match those of a lot of people here, including me.

About you right arm 'buzzy' feeling when you type or use the mouse, I get the same thing, in both arms, I have tendonitis in both of them. My suggestion is to try some Advil. I take 6oo mgs when my arms are hurting and it works pretty well. If the Advil make them feel better it might be just simple tendonitis (or other minor muscle swelling) due to the repetative motion of typing and mouse holding. I also use a jelly wrist rest when I type and it helps.

By the way, my arms and hands twitch more than the rest of my body especially if my tendonitis is acting up and bothering me.

I hope this info helps, and I hope you start to feel more reassured.
Don't be shy about posting and asking questions if you start getting "ALS nervous" , from what I have noticed, the people here are really understanding, and helpful!

Good Luck to you!
-Wittesea :)

Thanks to you both

PostPosted: December 13th, 2002, 2:02 pm
by Leah
"Thank You".

I am getting my money jar out right now and I am going to delete all ALS sight asap!!!!

Again, much thanks,

PostPosted: December 13th, 2002, 2:04 pm
by Joanne
Your story is very familiar. Have you been using the computer alot..the reason i ask is because before all this bfs stuff started happening when i was on the computer and sitting in a crappy chair my arms would feel like they both fell asleep...i also got a numbness pins and needles feeling in my face...i was also very stressed at the time so the combination of things made my body react....and that was before the bfs stuff started. This may or may not be the case with you but try think about the stress levels and if you have done anything different lately.
When this whole thing started with me i completely flipped out and did not sleep for a week straight i was terrified. I followed the same path you are so many of us here. Read back on past post here. I bet alot of your questions will be answered and if not just keep asking them here. This forum is great and very supportive. Try not to get too worried, the holidays are are can walk, talk and have wonderful children to take care of....they need you and you need them....
focus on the present and try not to worry about what next. (i know easy said then done :)