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mamaoftwo

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I saw on the thread started by UCLA that someone asked about drugs that help with twitching. I take neurontin and it helps a lot. I know there has also been a thread that says there is a link between taking neurontin and ALS (in other words it can cause ALS) but I had all these symptoms before I started neurontin. I used to twitch 24/7 and feel every single one. The worst being the ones in my elbows or shoulders or face that would persist for more than a day. Now I know they are there but they are "quieter" if you like and sometimes I barely notice them. At night they are back however. I still get through a day without focussing on every single one which makes a huge difference for me. I know i am just masking the problem because if I miss a dose of Neurontin, my twitches ramp up.
Some people have also found that taking ativan or other muscle relaxants can help. Never did anything for me.
 

MaryMcK

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When I was at my neuro appointment last week for my FTD, I mentioned that my day time twitching in my legs seemed to be less since I've upped the gabapentin to 2400 mg to help with the night time cramps. She said if the twitching has lessened with gabapentin then it isn't ALS. But she has referred me to the ALS Research Clinic in Toronto. Interesting eh?
 

Jamiet

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Try Calcium, Tums is the cheapest form. Mike on here said it helps. I found it does help a little, i eat two each 1000 mg per day.

My twithching is not like it used to be, its still here, either i don't notice it like i used to, or it just decreased a little. Dont' get me wrong, i still twitch alot.

I've got HORRIBLE cramps when i wake up in the morning. My legs hurt sooooooo baaaadddddd i can't stand it, specifically, my quads...by the way they are the muscles shrinking now...

rgds,

jamie
 

vmd

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Jamie:

Have you noticed associated weakness with the atrophied areas? If not, then this would be a good sign. In my case, I now have weakness in my left hand (cannot twist open certain caps), and my left wrist has certainly atrophied. Not a good sign.
 

Jamiet

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It depends what you call weakness....i don't have, that i know, "clinical" weakness, but

My left arm..is just not right..... I can still open bottles, etc, but..i have exercise intolerance bigtime.

Walking is messed up and it seems my balance now..i have to really pay attention, i drop things all day long.

it is a good sign, but i have definite muscle shrinkage. DEFINITE.

Now, do i have ALS...i suppose not at this point, biopsy and ALS spec, i have to belive that, hence, i'm heading down the lyme road, it'sa bout the only legitimate explanation at this piont adn the fact, the ELISA was positive and my first WB was borderline, coupled with symptoms and 5 neuros eliminating everything else, my LLMD said he's 99% sure. AM i sold on it...NO...will i see if that's what it is and chance on treating it..YES.

What a wonderful world huh......

I really feel for you VMD, how can we help, you are alone. Let me know please, you are all my friends..lyme...ALS or whatever is m aking our lives miserable...we're almost like a team huh!

rgds,

Jamie
 

vmd

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Thank you Jamie, I appreciate your concerns. It's a waiting game for me as my symptoms progress. I plan to see an ALS specialist sometime in December and expect some type of diagnosis then.
 

patricia1

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On friday night the left side of my right knee cap started to twitch I mean twitch and jerk it was so bad it kept me up all night Sat and Sunday Today its not soooo bad ,however I now have a dent where the twitching was>So now that part of my leg is atrophied and I find it hard to get up from a low sofa or toilet sit.SO MUCH FOR TWITCHING ATROPHY AND WEAKNESS they all go together
 

vmd

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patricia:

ALS is such a mystery. Ironically, for me the area (upper right arm), that first showed weakness never fasciculated until sometime after the weakness. Even now, I rarely have fasciculations on my upper right arm. The upper right arm also does not appear atrophied. Other parts of my body have atrophied, but not the area that first showed weakness. How do you figure?
 
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