ALS muscle twitching

[spud01]

Jeannie,

I will get this posting stuff sooner or later, I apologize to everyone who possibly keeps reading my same posts over and over.

I wanted to ask everyone about muscle twitching. Specifically, the characteristics, is it early or late sign. Is it constant or just isolated, is it scattered or localized, and if it is associated with other symptoms. It seems this is my major symptom thus far.

Any information is appreciated.

Spud 01

[whitey]

My muscle twitches are mainly behind my upper arms and last for 5-15 seconds usually later in the day.

whitey

[ladave]

If the twitching is related toALS, then it is called fasciculations and is caused by irritation of muscle fibers due to nerve degeneration and/or reinnervation. Every ALS patient is different, so it is hard to say if they are an "early" or "late" sign. For me they were the first symtom and preceded any weakness or atrophy. I now have them all over my body, in regions otherwise unaffected (i.e., no visible weakness or atrophy). Mostly they serve as a constant reminder that I have this wonderful disease.

The thing is, fasciculations (twitching) can be benign- or caused by many other things besides ALS. So if you only have twitching without other ALS symptoms, you probably don't have ALS. Only a qualified neurologist can tell you for sure. Good luck.

[Al]

My fasciculations were my first outward sign. Started in righ tcalf and more than 3 years later they are everywhere below my shoulders along with some atrophy and breathing problems associated with the atrophy.

[spud01]

Thanks for the information. This site is so informative. It appears that the muscle fasiculations are in itself an early sign. Everyone seems to have them before any weakness or atrophy. Is that what brought you to your neurologists, the fasiculations.?

If you read informative sites on ALS (medical sites). It appears the twitching is a sign that comes after deterioration and weakness and atrophy. They say the twitching is due to the wasting. Well, now I have learned that is not true.

that is the main reason my PC sent me to the neurologist, which has now brought me to the testing and diagnosis stage. How long after the EMG and NCS did a diagnosis come for everyone.


Spud

[spud01]

If anyone can give me insight on EMG and NCS, what to expect. Is it painful. Will they be able to tell from these tests if you have ALS, or can I expect more tests.

Spud

[hope]

My husband had muscle twitching as a first sign of als, he had one little twitch in his left arm that was there all the time. Over the last year it is now widespread. About a month or so ago he has now been told the twitching is in his tongue and face. He has it everywhere now. He has lost muscle in his hand and arms.

Sandy.

[ladave]

If anyone can give me insight on EMG and NCS, what to expect. Is it painful. Will they be able to tell from these tests if you have ALS, or can I expect more tests.

Spud

Don't want to scare you, but the EMG and NCS do cause some discomfort. For the nerve conduction study, you will receive small electric shocks on your arms and legs. For the EMG, small needles will be placed in various muscles. These studies will reveal whether there is any "denervation" of your muscles, which is critical to determining whether you have ALS. If the EMG is normal they can pretty much rule out ALS. If the EMG shows denervation, they will do other tests to rule out conditions which can "mimic" ALS.

The diagnosis of ALS is based upon the "El Escorial" criteria, which you can read here:

http://www.wfnals.org/guidelines/1998elescorial/elescorial1998criteria.htm

One thing you should know is there is currently no single test that can diagnose ALS. The EMG is crucial but must be looked at in the context of clinical findings. Here's hoping you do not have it!

[Al]

I'd have to agree with Dave. Not a lot of fun but not as scary as it sounds. Heck after 4 or 5 times it's a piece of cake. If you get enough opinions and each one should have their own tests to work with it does get easier. After you've had it done remind me and I'll tell you another story. Don't worry though.
Al

[spud01]

Thanks Dave and Al,

Oh boy, I can't wait.

Spud (Terri)

[margeo55]

hi my muscles are twitching most of the time, not all at the same time.
does anyone have cramps? like the muscle tighten right up, for 30 sec to a minute and then lets go. i have been having them quite often especially in the lower calf muscle, also about once to twice a week in my neck muscles?
painful as ever,can't do a thing until they release.
marianne

[ruby ben]

Hi - I am in year 3 1/2 since I started limping anhave never had twitching or fasciculations but I do have atrophy in my right leg - we are all different..............ruby from vancouver

[Al]

Hi Marianne. Do your cramps happen at any particular time? I find mine will cramp in bed if I position my leg a certain way. Has any of your doctors suggested Quinine for the cramping?
Or has it not been a big enough of a problem that you haven't mentioned it to them?

[margeo55]

hi al
usually the cramping is more in the evening and during the night. i did mention it once but they didn't discuss, maybe i'll bring it up again a s it is happening more often.
marianne

[Al]

Yes you should. A lot of times if you go into the doctors and don't have any specific complaint or questions written down it can be very nonproductive. It will probably get worse before it gets better so some meds would be a good idea. As I've said before 300mg of Quinine has been working well for me for more than a year now.

[Diana]

If anyone can give me insight on EMG and NCS,
what to expect. Is it painful. Will they be able to tell from these
tests if you have ALS, or can I expect more tests.

Spud

yes, with an EMG they can tell I have heard...

I just went for one it's really not that bad...it's more annoying
but the needle was worse in my allergic testing.It's a great test
to have nerve sensor test too.
will it be EMG of the L3 ..L4 area..

I had one for the upper spine to the brain too..
electric shock goes into you and your muscles jump just laugh it off...
I did and GLAD I went for it...

I was told I had MS,before I went for those tests
I NOW know it's Lyme Disease

please be checked by the BEST LAB

IGENEX lab in CA...
1 800 832 3200, call they will guide you and give you a kit .
get your blood drawn by your doctor and mail it out
in the box Igenex gives you....



all these years I went misdiagnosed
my legs were numb and like jello.
my spinal came back negative for lymes (not uncommon though)
and so did blood test done at Quest Lab( not uncommon though)

white markens in T spine on MRI and brain MRI 2 white lessions

and Lyme Disease is the same symptons

I am on ALOT of antibiotics,Doxy,Zithromax,Mepron and will
go on a drip of
Rocephine...and feeling better now then before
STERIODS mess you up if you have lyme disease..

also read this about ALS

IMPORTANT
MDA Research | FDA to Allow Ceftriaxone Study

May 4, 2006
FDA to Allow Ceftriaxone Study
After more than a year’s delay, during which the Food and Drug Administration received additional data showing the drug was safe to give intravenously to amyotrophic lateral sclerosis (ALS) patients for several months, a trial of the antibiotic ceftriaxone is slated to begin this summer.

Ceftriaxone, used to treat neurologic infections, may have benefit in ALS by enhancing a chemical recycling process in the nervous system. It will be tested in some 40 centers, according to neurologist Merit Cudkowicz, an MDA research grantee at Massachusetts General Hospital in Boston


###



Good luck all keep the faith and be your own research Doctors
I think some Dr's are too busy on the course ( golf course)
some doctors really care and listen:)

[skode]

I guess this is as good as place as any to jump in and get my feet wet. Lyme disease rang a bell with me.

Hello everyone, my name is Pat. I’m new to this forum, but not to ALS. I was dx’ed back in Feb 02. It’s amazing how often the Lyme issue pops up on every forum. I went through the Lyme controversy myself when I was first dx’ed. Needless to say, I didn’t have Lymes disease. But every time I read something new about it, I can’t help but hope that maybe everyone was wrong about my ALS and it really is Lymes! Oh well, let me get back to reality. I hope that those of you with an unconfirmed diagnosis of ALS, actually do have Lymes disease.

Here’s some info that that I’ve gathered about ALS and Lymes:
Recent items in The ALS Digest, an online publication, have suggested that the tick-borne, bacterial infection known as Lyme disease can mimic ALS and that new tests can tell the difference between these conditions with certainty. But can this infectious disease actually be confused with ALS? And, if you do get a positive result on a Lyme test, can you be assured you don’t have ALS? Not likely, experts say.
http://www.mdausa.org/publications/als/als8_3.html#Lyme

There’s a good discussion about Lymes & ALS at ALS-TDF:
http://www.als.net/forum/topic.asp?TOPIC_ID=438

From what I’ve read, I fail to see any correlation between ALS & Lyme because of ceftriaxone. Maybe, I’m missing something about it and someone can fill me in?

Even though ceftriaxone is an antibiotic, its beneficial effect isn’t related to its ability to kill bacteria. The scientists are especially enthusiastic because ceftriaxone works on a principle that they’d thought only gene therapy could follow—and gene therapy’s usually a trickier way to correct flaws. The drug appears to turn on a gene that instructs nervous system cells to make glutamate transporters, molecules that pull excess glutamate out of the way before it does harm. ….
http://www.alscenter.org/alsalert/2005_winter/2005_winter_page001_turn_on.html

That's enough bs about lymes. How's everyone doing?

"We are, each of us, angels with only one wing; and we can only fly by embracing one another."

Pat McClellan

Limb onset 5/02, Dx 2/03, W/C 4/04, Bipap 11/04, Peg 10/05, Hospice 1/06

[Al]

Hey Pat. How's it going. Welcome. Where are you from? It's been raining here in southern Ontario for so long I think I'd start building an arc if I could still hammer nails. I think I've seen the name skode before. Was it on yahoo ALS or BT?

[skode]

Hey Pat. How's it going. Welcome. Where are you from? It's been raining here in southern Ontario for so long I think I'd start building an arc if I could still hammer nails. I think I've seen the name skode before. Was it on yahoo ALS or BT?
Hi Al
I'm from South Jersey and it's been raining so much here lately that I need new wiper blades on my w/c. The old ones (my wife) are worn out.

Skode is my internet handle on most forums - BT, Build, & ALSTDF. It's an old nickname that someone gave me back in the navy. I use it to see if any of my old buddies have become PALS or CALS. I go by my real name Pat McClellan on Yahoo because I couldn't get skode there.

Looking forward to chatting with you and the gang.

I couldn't get the custom avatar field to appear on the avatar selection menu. I tried changing to the advanced interface under options, but no luck. :confused: Smiles are working.

Take care

Pat McClellan

"Tomorrow is the most important thing in life.
It comes into us at midnight very clean.
It's perfect when it arrives, and it puts itself in our hands.
It hopes we've learned something from yesterday."

[Al]

Hi Pat. If you go down to Welcome new members there are more directions in a sticky that might help you upload an Avatar. After mine was designed by a friend I saved it in my briefcase and uploaded it from there. If you're still having problems we can get David to look at it. Al.

[Buxtehude54]

I found info regarding the use of magnesium on Lyme disease sites. I tried it and the muscle tics disappeared. Can't say that it was because of the Mg.

The following is what I found:

Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart
skips and weakness. It may also help in energy level and cognition. DO NOT rely on “cal-mag,” calcium plus magnesium combination tablets, as they are not well
absorbed. Take at least one to two tablet twice daily. Higher doses may cause diarrhea, and you should
check with your physician before using more than this. In some cases, injections or intravenous doses
may be necessary. Continue long term

[hankvankat@gmail.com]

Hi, I am 52 years old with diabetes and on off muscle twitching of right arm for the past 2 months with increasing slight stiffness or tired feeling after muscle firing most of day. I see my GP Monday, could this just be part of diabetes? Or is it better to see doctor? Thanks.

[chris_uk]

Al

I am interested in what you said in this thread about how your leg cramps up in bed, when you put it in a certain position. I have noticed that if i am in bed and lay with my leg fully stretched out then its ok, however if i bend my leg up towards me i can feel my calf going mad with twitches and start to cramp.

Is this what you experience???

If you do is this a tell tale sign of it being nasty??

Thanks

Chris

[Blizna]

Those whose twitching preceded weakness: did you have widespread twitching? was it nonstop? And how long after twitching you noticed weakness?
Answers on those question would help us a lot, I think,

[sdsyd]

sort of related to this post? Question about NVC portion of EMG: WHen I had mine In july (left arm only ) my entire BODY would jump when she "zapped" me. I asked if this was normal and she said " Yes, its called your flight or flight response". Did anyone else experience this "normal" reaction? LOL I was embarassed by it. Try as I might, I could never inhibit it.


You all have a happy Monday!!!

Oh one more question-what in the heck do you mix witht he tonic water?? I think it tastes terrible, but am not willing to give up on it . I tried it with cranapple juice and with grape juice.

And as far as twitchign- which was what this original post was about. Mine was isolated to left thumb for several months. Then a few in quads-then pretty constant in butt, almost non stop in bottoms of feet, some in outer calves, some in shoulders, becomming more apparent now in (left) neck and face.

Symptom Onset SOmetime in Summer 07.
Dx-suspect MND.
Follow up in Jan. w/ neuro and awaiting appt. with Colorado ALS/MDA clinic
Cindy

[BethU]

Hi, HankYank ... welcome to the board.

Since you're seeing your doctor today, I'd mention it to him/her. I understand that diabetes can cause various neuropophies, so best to be sure. It sounds benign to me, but then, I know nothing about it. :-)

Good luck!

[rose]

Cindy, the tonic water is an acquired taste for some. (I don't mind it, but then I also will drink a gin or vodka tonic now and again) Maybe just try some lime squeezed into it? It really does help, doesn't it!

[crystalkk]

Cindy,

I agree the tonic water is a very aquired taste. Everyone says don't buy the store brand it doesn't taste as good as the name brand. My husband drinks gin & tonic (has an aquired taste) and even said the Shoprite brand was nasty.

[hankvankat@gmail.com]

Hi, thanks for the reply.

[Al]

Hi Chris. If I recall right if I pulled my leg up towards my body I'd either get a calf cramp or thigh cramp. Never both at same time. I'd have to jump up and lean into wall to stretch the muscle. I have no idea if it'll be nasty for you but in the end it was for me.

AL.

[Al]

I take baclofen and Quinine and am cramp free 99% of the time.

AL.

[grantst44]

I don't know how to start my message without replying to a thread so I'm sorry if this doesn't pertain to this thread. If someone would let me know I would appreciate it. Since veterans diagnosed w/ALS were approved for full VA benefits, do we just call the VA to make appointment? My husband went through the process of getting his name in their computer system about 8-9 months ago but they said he has to wait to retire (and have a lower income). Has anyone applied for benefits and made appointment yet? We live near Hampton where the VA center is so it works out good for him. We also have lots of bills even though we have insurance. It just doesn't cover 100%. Thanks.

[ZenArcher]

Step 1. Contact your ALS clinic and explain that your husband is a veteran and you want to apply for benefits. They should be able to help. If not let me know and proceed to step 2.

Step 2. Contact a veteran service organization such as Paralyzed Veterans of America (PVA). For your are their information is:
Hampton VAMC
Building 137
Room A-123E
Hampton, VA 23667
757-722-9961, ext. 2943

PVA will be able to get you through the process of applying for service connection. Also the ALS Association has prepared a website to address many of the questions at: http://www.alsa.org/policy/veterans.cfm. If you need help feel free to post here or contact me at ALSMatters (http://www.alsmatters.org). I have been working with The ALS Association for months on helping to get ALS presumed and helped in preparing most of the documentation for the process.