Twithching and dirty EMG!

[mazzi]

Dear All,

I have been following the forum for a while now.
I started with twitching in my back one year ago (maybe even before) and widespread
on march this year, but I have them 24/7 on my calfs.

I had a few neuro visits which went out clear, no strenght problem, no brisk reflex, non babisnky etc. However I had the first EMG on April which show fibs and fasciculations on my calfs! According the neuro (not a neromuscolar specialist) nothing to worry about. In july i had a second EMG with the following result:

GIANT PHOLIPHASIC PUMS in all the muscles, the neuro that performed the EMG told me he didn't find fibs, SW, neither denervation but only reinnervation signs, but he address me to an ALS clinic for a second opinion.

So I meet the head of ALS clinic in July, which unfortunately sees a lot of people with the deases because the place where i live as huge percentage of ALS patients...

Had two clinical visit with him everything all right and one more EMG at the end of August which went out clear only with isolated fasciculations.
So I got a report from the neuro of no ALS but I am scared as hell because of the previuos EMG i had....

Thanks for the time for reading this!

 

[notme]

Why in the world would you be worried when an ALS specialist has cleared you? Fasciculations on an EMG do NOT MEAN ALS. I don't see anything in those results that should have made you even consider ALS.

I'm sorry--but it's just plain silly to be concerned with ALS after being cleared by 3 neuros.

Dear, there are a ton of people here WITH ALS that would love to hear the results you've been given.

What did the doctor to you that even led you to consider ALS in the first place? Fasciculations without any weakness or atrophy mean nothing. Look up Benign Fasciculation Syndrome.

Your second neuro sent you to a specialist in ALS--and he's said you're fine. I guess I don't understand what it is you want from this forum?

Good luck

 

[mazzi]

Notme,

thank you for the reply.

Maybe you are right the only thinks that still concerns me is the result of the first EMG, accompanied with the cramps I have been experiencing lately.

From my reading and understanding GIANT PHOLIPHASIC PUMS are a sign of ALS.
I would like to hear Wright's opinion about this, thanks again.

 

[trfogey]

Your reading and understanding of giant polyphasic MUPS is incomplete and you are incapable of viewing your own situation rationally.

How do I know this? Because you are ignoring the advice of not just one, but two highly trained professionals who have actually done EMGs on you and seen the entire clinical picture that your body presents, concluding that you do not have ALS or any reason to be concerned about it.

Move on. You don't have ALS -- the specialist said so. Save your ignorance for discussing football.

 

[mazzi]

Re: Twitching and dirty EMG!

Hi trfogey, thanks for the reply.

I really hope you are right.Anyway i forgot to mention my blood test reported a CPK at 220 ...add fasciculations plus fibrillations and giants mups...well you get the point. I am not among those who get a complety clean EMG and still bothers and worries ...my EMG has some abnormalities, and this is a fact. Non to mention the last EMG has found fasciculation in ALL the muscles examined (4 limbs, back,abdomen etc).

 

[notme]

You are aware that there are a LOT of things that can cause an abnormal EMG, correct?

Wright is the "go to guy" here for EMGs. He has a major disadvantage in your case--he hasn't SEEN you nor examined you. Both of which were done by a neuromuscular specialist that repeated the EMG and found no problems other than random fasciculations.

Congratulations. You've diagnosed yourself with ALS based on twitches, totally ignoring the physician that spent, oh, around 12 years of study to tell you that you don't have ALS.

You are aware that ALS causes weakness and atrophy? Or, in UMN, spasticity, positive Babinski and other assorted findings on clinical exam? You have none of those--but are still convinced you have ALS?

Just out of curiosity, what did the neurologist say?

 

[trfogey]

Re: Twitching and dirty EMG!

I am not among those who get a complety clean EMG and still bothers and worries ...my EMG has some abnormalities, and this is a fact. Non to mention the last EMG has found fasciculation in ALL the muscles examined (4 limbs, back,abdomen etc).

You're worse than those people. You think a little I n t e r n e t research makes you an expert on EMGs. More so than the two neuros who examined you and found little to be concerned about.

Your EMGs found isolated sets of neurological phenomena in several parts of your body that can be caused by many different things. They did not find the complete set of symptoms that would indicate that a particular area of the body was under attack by ALS. You are the one that stuck all the isolated pieces together and decided ALS, not them. And now you're "scared."

Congratulations, genius. You are "scared as hell" because your ego is bigger than your brain. Why bother to go to a doctor if you're not going to listen to what he/she tells you?

 

[mazzi]

Trfogey, thanks for the feedback.

I havn't been cleaned by the two neuro, infact the result of the second EMG says:

Chronic neurogenic findings (axon / motor neuron?)

Thus arises the suspicion of motor neuron disease!:shock::shock:
This is why I was address to the ALS center for further inspection.

 

[TedH5]

No need to be scared about ALS. Clear your mind of it, an ALS specialist cleared you. Plus your EMG showed only reinervation with no denervation which is most likely just a sign of a previous injury that is healing.

Celebrate you have a lot to be happy about you do not have ALS! Congrats!

 

[mazzi]

Thanks for the reply Ted, really appreciated.

You're right about what you say but it 'very difficult also because lately I have cramps in the forearms, shoulders and calves, and because I found it harder to raise a few objects like bottles of water.

However, Ted, I read your story I am very happy for you, I hope you keep these great results as long as possible.

 

[Ms. Pie]

I truly dislike the phrase "You're right but..." He's right. Leave it at that. Enjoy your life!

 

[wright]

You asked me to look at your thread, Mazzi, so here I am

As you have been told by everyone on here and the three different neuro's, there is absolutely no evidence you have ALS . . . NONE!

If you say you have been following the forum for some time, which led you to me, then you have read my posts and know what large MUAP's mean in the absence of active denervation (i.e. fibs and PSW's). To remind you: IT MEANS ABSOLUTELY NOTHING in regards to ALS, which is why all three neuro's and the good people on this forum have told you that ALS is not what you have. Congratulations.

What do you have, is probably what you're asking yourself at the moment: In my opinion, absolutely nothing except some muscle twitches (big deal) and some cramping (manageable) and a tremendous amount of unwarranted anxiety (also manageable).

Stop this nonsense now before it becomes a serious problem for you. Take care.

 

[mazzi]

Hello Wright and thanks for the time you have spent in reading my post.

Maybe I was not clear in my opening post but the first two EMG were dirty, the first found fibrillations, fasciculations and giants MUPS in calves, the second giant MUPS and fasciculations(the neuro told me that there was reinervation in place).

The third EMG in order of time at the ALS's Clinic found fasciculations in all muscles examined. My concern is relative to the first two I fear that the third has not been carried out in the correct way.

 

[wright]

OK, let's try this again (because your neuro already explained it to you . . . you just didn't listen or didn't want to listen).

The first EMG showed fibs and PSW's (i.e. active denervation).

The second EMG showed no fibs or PSW's (i.e. active denervation was over) and showed large MUAP's (i.e. reinnervation from the denervation that occurred earlier). The good news is that the active denervation is done and not progressive. In other words, you have healed from whatever was causing the denervation. If you had ALS, the active denervation would not have stopped until the muscle was gone.

The third EMG showed no active denervation (look above for the good news again).

You also go-on to say that maybe an ALS-SPECIALIST DIDN'T PERFORM THE EMG CORRECTLY! REALLY? ARE YOU KIDDING ME? I'M GOING TO ASSUME THAT SOMEHOW YOU MISSPOKE!

As I said in my previous post: stop this nonsense now before it becomes a serious problem for you, although it appears that it might be too late. Take care.

 

[pmbenb83]

Mazzi,
I know how scary this is all is, we've all been in your shoes... worrying. You did get tests done and did get some answers. Try to let it go for at least a month and see how you feel. Just wipe it off your radar and give yourself some peace of mind. If you are still having some problems, then seek another opinion elsewhere, get your CPK done again, etc. I bring up the CPK because you said that your CPK was a little over 200, which my husband's was over 800 the first time and over 1000 the second time. We were told that this could happen due to activity, ie lifting weights, running, climbing stairs, etc. Due to my husband's CPK increasing without exercise, it was another piece to his puzzle along with bad EMG's and nerve conduction tests... all of which were way over my head, too much information.

In this life, we have no guarantees that we will live to see tomorrow. The key is to try to enjoy this moment. Worrying is only going to waste your time to enjoy a peaceful sunrise, a smile from a stranger, a hug from a loved one, etc. Worrying is exhausting. Don't let it consume you.

Please give yourself 30 days of not worrying, let your body calm itself down and go from there. Believe me, 30 days will fly by.

Take care.