Old 10-08-2008, 12:57 PM #1 (permalink)
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Default Trying to not to use Dr Google

Hi all

I have posted quite a lot over the past 5 weeks, so i apologize if i am starting to annoy people, that is really not my aim.

I started getting constant twitching in both my calfs 5 1/2 weeks ago now, and ofcourse it let me to ALS when i used google. Now i am not going to ask about twitching as i know that this can be caused by hundreds of things. Also i appreciate that every ALS story is different but i guess i just need a bit of guidance as i dont want to use google!

Firstly weakness......i have read that you start to trip up etc or cant turn a key, but surely you would feel something before you got this far? i get the feeling in my right calf that its tired alot, sore etc....could this be caused by the twitching? i mean not in a bad way but could the muscles twitching all the time just naturally cause my muscles to tire?

Atrophy......When i look at my calfs it does look like my right calf is different from my left, its hard to describe, i can see the outline of it more, which would make you think it was bigger, but could this be the start of it to waiste away as the gap i see (which makes me think its bigger) is infact where the muscle is waisting away. As on the left one there is no gap round the calf it all just seems to merge into the leg....if that makes sense lol

Also it was atrophy would i have definatly felt some major weakness by now? or can you atrophy alot without noticing?

Question for Al, Did you symptoms just start with Twitching in the calfs? was this the frist thing you noticed?

I know that you will probably be thinking just go to a neuro and get it sorted, and i am, but my appointment is not untill the 18th November and i cant afford to go private.

One last thing,this all started one saturday when i woke up and near my lip was twitching, this went on for 4 hours and ofcourse i googled it and found ALS. i worried about it so much that day/night, and it was the next day that my twitching started in my calfs......is it possible that my worrying caused this or not? i mean surely worrying would not start 24/7 twitching would it?

I apreciate all your time, i have tried to put all my questions in one e-mail this time

Thanks All

Chris
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Old 10-08-2008, 01:33 PM #2 (permalink)
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Chris, I don't know why ALS comes up right away when twitching is googled. I wish it didn't.

I can't help you as far as personal experience with the calves for a first sort of sign. My trouble started in the bulbar region, and has only recently moved to my legs. (I have a diagnosis of bulbar palsy and probable MND) However, when I did begin to have problems with my legs, I absolutely noticed weakness before the twitching started. - Like BethU had said on another thread, the weakness found me, I wasn't looking for it. Its with actions I use and have used just during daily routine, nothing special as far as testing to see if I could still do things, and then to find I couldn't.

I do understand why the fascis can be so unsettling, the ones I am able to feel are amazingly annoying. Try your best to remember that benign fasciculations can occur anywhere in the body, they can be active and violent or infrequent and barely seen. There is nothing to tell from appearance a benign twitch from a pathalogical one. We actually talked about this when I was down at Hopkins last week.

From what I've read, anxiety/worrying can most definitely make any sort of twitching worse. I have seen some amazing YouTube videos of benign fasciculations and one would think from watching the video that the person had something horrible wrong with them, when in fact they don't.

Whether or not you perceive yourself to have atrophy (shrinkage) really isn't something to look for. Your body refusing to cooperate performing activities or tasks is a much better measurement.

I know you've been on the forum for a while, so you've surely read some members urged to try and keep from Dr Google (as the title of your thread here states). My best advise, is if you keep reading on here, and it helps calm your fears, or you get a sense of strength for coping, then by all means, stay around and read as much as you can. But, if googling various terms and reading on forums like these serve to fuel your fears, then do everything you can to stay off of the internet, and busy with something else until your appointment.

Personally, it is hard for me to spend too much time on the forum,. If I ever want a reality check, I only have to read a little over on the CALS forum, because my heart just breaks when I read their posts in particular. My problems, although perhaps deemed serious my my doctors, seem insignificant in comparison.

Good luck dealing with this.
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Old 10-08-2008, 02:01 PM #3 (permalink)
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Boy Rose I must be a glutton for punishment. I read on most days, each and every post on each forum here.
Chris. My right calf started twitching first and then the other started. I had weakness before but we were attributing it to the Quad bypass I had had 2 years earlier so I'm not sure when my weakness started from ALS.

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Old 10-08-2008, 02:32 PM #4 (permalink)
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Quote:
Originally Posted by Al View Post
Boy Rose I must be a glutton for punishment. I read on most days, each and every post on each forum here.

AL.
Al, I honestly don't know how you do it! It humbles me to read of what so many go through on a daily basis, CALS and PALS.

I've known that you make it a point to read all posts, and its been more than a few times that I've had to stop myself from messaging you just to ask how you do it! Thank you!
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Old 10-08-2008, 02:40 PM #5 (permalink)
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Well it does take time but I used to read a lot so have the gift of being able to read fairly quickly and absorb most of what I read. Now remembering it can get a bit dicey as I get older but most of us get that. LOL.

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Old 10-08-2008, 05:28 PM #6 (permalink)
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Hi, Chris ... you said, i get the feeling in my right calf that its tired alot, sore etc....could this be caused by the twitching? i mean not in a bad way but could the muscles twitching all the time just naturally cause my muscles to tire?

Before I was diagnosed with ALS, I was taking a med that made my whole body twitch very heavily ... and I was sure this was part of the problem in my losing weight during that period. Seriously. My muscles were working hard all over, and that HAD to be burning calories!

It makes perfect sense to me that muscles would ache after a prolonged period of twitching. I mean, they're working and expending energy.

I don't know if any medical expert would agree with us, but I am sure you are right.

Good luck,
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Old 10-08-2008, 05:57 PM #7 (permalink)
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I twitch 24-7, primarily in my legs-mostly in the thighs...and I am so sore in my thighs...I wonder if there is a relationship....?
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Old 10-08-2008, 08:59 PM #8 (permalink)
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I would think that the constant twitching that goes on could very well be burning calories and also cause fatigue/cramps/aches where they occur.
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Old 10-09-2008, 10:31 PM #9 (permalink)
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Hi Chris,
I read your post and thought, "Wow. How did I type something under another user's name?" LOL WOW. Our "symptoms" mirror each other almost exactly! I started twitching about 5 months ago now. Mine started in my upper back, then exploded everywhere. Today? The bodywide stuff is almost gone, and 85% of it has now settled in my right leg, and mainly in the area including my calf and right down to my toes. My leg is SO SORE and . . .I guess tired or fatigued would be the best description....sometimes that it has me limping most days now (or trying my best not to limp I should say!). I also in my many, many, MANY examinations of my right leg compared to my left, thought I noticed - and now see without a doubt that there is some type of atrophy happening. There is a 'hole' about the size of 1/2 dollar on the outer side of my r.leg now, and that whole area of my leg just looks so much more defined than the left. Very disturbing.

I too have been questioning (mostly in my own head!) "Is this feeling "weakness?" How stupid right? LOL You'd think I would know if I'm actually weak or not, but I have to say I can still stand on my toes, walk heel-to-toe, etc without too much difficulty. My leg hurts like hell through it all, but I can still do it. I don't know what to think. Lately the "twitching" in that part of my r.leg is like a stew that's about to boil . . . seemingly hundreds of little bubbly-like twitches happening again and again. And then sometimes it stops altogether, and then sometimes there's just regular pop-----pop------pop stuff. All I know is that I can't tolerate my high heels anymore and that is really upsetting!

As an aside and in case you're wondering, back in mid-August I saw a neuro who is an ALS specialist. Had an EMG & NCV (both clean) and was told essentially, "This isn't ALS, but I don't know what it is. BFS is a good label if you need one". My leg has gotten so much worse since then that I just saw another neuro whose opinion thus far is that I may have something called MMN or Multifocal Motor Neuropathy. My EMG and NCV are being repeated, along with having a lot of blood tests done. We'll see.

Hope that helps!
Sincerely Yours In Uncomfortable Fatigued Twitching,
Suzann
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