How many EMGs are enough?

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How many EMGs are enough?

Postby Jayden on October 1st, 2014, 9:20 am

Hi,im new here...i been reading for a few months ,im also an Als forum memeber.
My question is how many EMGs are enough?
I been twitching,24-7 for the last 2 years.
Had 5 EMGs normal.
Normal reflexes.
Since about 16 months i been having shortness of breath 24-7 not on and of.
Some trouble swallowing and voice changes.
Twitching on face and neck area 24-7.
And entire body twitching.
I hadn't had a " good day" for the last 2 years.
Trouble sleeping,pain,stiffness...etc,etc
My last EMG was about 3 months ago,and Neurologist diagnosed me with BFS.
Because of another normal EMG.
No weakness on limbs.
I have tried lots of different therapies and remedies without luck.
Btw my cognitive abilities are fried.its hard for me now to concentrate or multi task

Ok here goes my ALS 5 min worrying of the day. :roll:
I had never got my tongue tested in EMG .Last time neuro took a look at it and he said its ok.
I had read that some peps got a few normal EMG years before being diagnosed with bulbar onset ALS.
Im 38 yrs old,male.
3 different neuros,1 "regular
"and 2 ALS specialists.


Any help or suggestion will be appreciated.
Im just getting tired of feeling sick and not knowing whats next,besides this "thing" takes a huge psychological tow on ones life.
Last edited by Jayden on October 1st, 2014, 9:45 am, edited 1 time in total.
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Re: How many EMGs are enough?

Postby LKP1231 on October 1st, 2014, 9:26 am

2 years and 5 emgs? You don't have ***.
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Re: How many EMGs are enough?

Postby emmie.s on October 1st, 2014, 9:48 am

That much testing and that many EMGs and you're still worried about ALS? Nope, you're fine.
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Re: How many EMGs are enough?

Postby bobajojo on October 1st, 2014, 10:32 am

Jayden,

You sound a lot like me. I've been twitching for 3+ years and my twitching today is worse than ever. I have a hotspot in my bicep that has been going to 8 MONTHS STRAIGHT. You read that right. But my body twitches, pops, flutters, all day long. On average, I can feel 20-30 per minute all over my body. Calves and feet don't ever stop. Upper body has been crazy this past year. Biceps, shoulders, hands are the worst.

As I sit here typing this, my left bicep is pounding away, two muscles in my hand are also going (between thumb and index and also pinky side), my left thigh is thumping and my eyelids are twitching.

Anyway, I had my EMG done at the Mayo clinic. My tongue has been twitching daily for 3 years. They tested my left leg and arm and I asked them to do my tongue since it was twitching while I was in the exam room. They said no because if anything were going on in my bulbar region they would see something in my limbs and then they would test my tongue, but only then. Ofcourse, my emg was normal but they did see fascics in 8 of 9 muscles tested.

I hope this helps. My son's name is Jayden btw.

-Matt
Over 10 billion twitches since May 2011.
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Re: How many EMGs are enough?

Postby Jayden on October 1st, 2014, 11:50 am

Thanks for the replays.
I guess I get kind of nervous , reading all that out of normal cases.
but the having trouble breathing is the worst symptom yet.
The twitching I kind of get used to, but still gets frustrating when it interfere with you're tasks.
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Re: How many EMGs are enough?

Postby misterjuanperalta on October 1st, 2014, 2:01 pm

Read this. Should help. viewtopic.php?f=3&t=20931#p157408
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Re: How many EMGs are enough?

Postby Scboy on October 1st, 2014, 2:21 pm

I know exactly how you feel. I have breathing trouble at times as well. I also just want this "thing" to go away. I know its not ALS, but I still feel like crap most days. My main problems are trunk muscle stiffness and leg pain.
Hang in there and just be glad you didn't pull out the ALS card.

I'm not a doctor, but ALS looks to be way off the radar screen for you.
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Re: How many EMGs are enough?

Postby Xina535 on October 1st, 2014, 6:08 pm

Jayden,

I am scared about my constant twitching, including face, and now also my recent voice changes, and more symptoms...so you are definitely not alone.

I wish I had 2 years and 5 clean EMGs behind me, and done by an ALS specialist no less. I just had 5 neuros, 1 clean EMG, and many people have told me (including doctors) that's enough.

I think many of us have 2nd guessed if our EMG or many EMGs were enough, since we had heard of those kinds of cases that you mentioned. I would think and even hope those cases were/are very few and I would say that you will just need to go with what the doctors who have evaluated you physically have to say. I know it seems like this is more than BFS, and it could be, but I think given your timeline and evaluations, it's not ***. I hope whatever it really is, is discovered and treated so you can finally feel better.
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Re: How many EMGs are enough?

Postby LKP1231 on October 1st, 2014, 6:30 pm

I'd be happy with one clean emg. Maybe tomorrow?
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Re: How many EMGs are enough?

Postby Jayden on October 1st, 2014, 9:35 pm

By my 2nd EMG I heard a doctor talking about BFS, but I didn't get diagnose until a few months ago, I said well if it's BFS I'll be glad to have it, it's way better to have BFS then having the other stuff :(
But then BFS, is not a walk in the park either...it's taking its tow on me and my family.
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Re: How many EMGs are enough?

Postby Jayden on October 1st, 2014, 9:38 pm

LKP1231 wrote:I'd be happy with one clean emg. Maybe tomorrow?

Being sincere, I said the same thing and here I am after 5 of them.
I hope everything goes well for you .
Last edited by Jayden on October 1st, 2014, 10:03 pm, edited 1 time in total.
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Re: How many EMGs are enough?

Postby Jayden on October 1st, 2014, 9:42 pm

Xina535 wrote:Jayden,

I am scared about my constant twitching, including face, and now also my recent voice changes, and more symptoms...so you are definitely not alone.

I wish I had 2 years and 5 clean EMGs behind me, and done by an ALS specialist no less. I just had 5 neuros, 1 clean EMG, and many people have told me (including doctors) that's enough.

I think many of us have 2nd guessed if our EMG or many EMGs were enough, since we had heard of those kinds of cases that you mentioned. I would think and even hope those cases were/are very few and I would say that you will just need to go with what the doctors who have evaluated you physically have to say. I know it seems like this is more than BFS, and it could be, but I think given your timeline and evaluations, it's not ***. I hope whatever it really is, is discovered and treated so you can finally feel better.

Thanks appreciated , I hope everything goes well for you too.
The hardest part it's playing the waiting game, it's a nightmare.
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Re: How many EMGs are enough?

Postby LKP1231 on October 2nd, 2014, 5:49 am

J did you have other symptoms besides twitching? That mostly mine everywhere but small
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Re: How many EMGs are enough?

Postby LKP1231 on October 2nd, 2014, 5:51 am

J did you have other symptoms besides twitching? That mostly mine everywhere but small. Mostly not seen. Mostly in feet and legs but many other spots too except face and neck. Soreness fatigue. Wishing now there had been sensory symptoms bc those aren't ***
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Re: How many EMGs are enough?

Postby Jayden on October 2nd, 2014, 8:21 am

LKP1231 wrote:J didvibrations barely noticedother symptoms besides twitching? That mostly mine everywhere but small. Mostly not seen. Mostly in feet and legs but many other spots too except face and neck. Soreness fatigue. Wishing now there had been sensory symptoms bc those aren't ***

Tension, headaches (pain on back of head)
Stiffness, trouble sleeping,fatigue, tremors, soreness, troubdle swallowing, voice changes,
Twitching, small like vivrations, can't see them but I can feel them, huge faciculations everywhere, face , arms, legs, tongue, neck, back, stomach, everywhere 24-7.shortness of breath.
feeling like my limbs are heavy.
There's more , but can't remember now.
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Re: How many EMGs are enough?

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