EMG Experiences PLS CHIME IN!

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EMG Experiences PLS CHIME IN!

Postby SLL on June 7th, 2004, 1:52 pm

I finally, after 5 years of twitching all over, forced my neuro to give me an EMG. I had been twitching a lot and kind of freaked myself out (again!) and decided to do it. My neuro is the Medical Director of the Forbes/Norris ALS/MDA center in San Fran, and Chairman of Neurology at Cal. Pacific Medical in San Fran..anyone work with him? He is great.

Well, he did not even want to do the EMG after my, yet again, totally normal neuro exam...but I pushed it. It was much easier than I thought - he was quite deft and I felt minor pinches upon needle insertion only. Well, here is my question...he started with the right arm and hand. Did a thorough NCV of that hand and arm. Did no other NCV testing. Did about 5-7 pokes, moved the needle around, had me tighten and release muscles being tested, etc.... he then moved onto the right leg...again same thing, about 6 pokes, etc... and then he turned the machine off, stopped and said "this could not be more normal. Are you going to stop worrying now?".....well I did for about a day, BUT here is what I am concerned about....that does not seem like the world's most thorough EMG. He tested no bulbar muscles (of course lately I am convinced my tongue has atrophied and that I am slurring words) BUT this guy does nothing but see neuromuscluar diseases all day long, hiw whole career. He has probably seen more ALS than most neuros put together and he is a well-known "2nd opinion go to guy" for tough cases....why would he short me the thorough exam? It just seems like I got up the the guts to get the EMG, and it has not calmed me down. QUESTIONS:

1. anyone had an experience like this??
2. I have heard a good EMGer starts out and tailors the test based on what he/she is seeing going along versus sticking every muscle automatically...so at some point, he decided going on would give him no additional info. Heard of this? is this common practice?
3. Anyone know - would they see changes on limb EMG IF bulbar onset. Ihave heard both yes and no.
4. Anyone else have the tight face, burning tongue, feeling like they cannot talk (but no one else notices anything?)

thanks!!
s
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Postby thetwitchkid on June 7th, 2004, 2:06 pm

S:

Let's review: 1) You have been twitching for FIVE YEARS.
2) You are getting neuro care from a PREMIER MDA Facility
3) Your neuro said your EMG is VERY NORMAL OR ....
i.e He is BORED by your EMG (my interpretation)

Sounds to me like its MILLER TIME :D Congratulations

Doesn't mean we don't twitch and it is annoying as hell, but it is BENIGN.

Have a great day
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I hear ya!

Postby SLL on June 7th, 2004, 2:39 pm

Rationally, I totally hear you! Then I twitch, or stumble over a word, or drop something, and...well i think you know.

Do you know if a limb EMG would have some indication fo something amiss if bulbar onset? It just seemed like such a 25 minute non-event compared to all other EMG stories I have heard. Even those EMG stories where it was the patient requeting the EMG not the doc(as was my case)
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Postby garym on June 7th, 2004, 2:53 pm

SLL,

After 5 years of bulbar onset als, the last thing you would need would be emg study. Put your fears behind you, and stop torturing yourself about als.

As for the emg, again after 5 years you would most definitely show "signs" on exam. They would be present and clear on the emg. Dr. Harati at the Baylor College of Medicine/Houston MDA/ALS clinic said that I would have signs on my emg after just 10 months.

Good luck,
Gary
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Postby thetwitchkid on June 7th, 2004, 2:54 pm

S:

My EMG/NCS was only done on the left side of my body. Why? At the time, that's where my primary twitching was. The neuro was an EMG specialist and his partner did the physical exam. They both said benign. I would believe your doctor, ESPECIALLY, given his MDA experience.

Given your neuro exam and EMG results, if you haven't, I would search down the Anxiety/OCD path. Sounds strange and hard to admit , but maybe this will give you relief. I now take Lexapro and my Obsession with the twitches and death is MUCH better.

Funny, I still don't fully beleive that anxiety is my true problem, but I must admit that the Lexapro has helped the ALS obsession.

Hope this helps
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Hey SLL

Postby Bradford on June 7th, 2004, 10:57 pm

Glad to hear your EMG couldn't have been more normal.

Insuarance companies have different billing codes for each individual muscle group and in a case such as yours where the exam just kept coming up normal, the physcian will find it harder to justify to the insurance companies for payment. Its not his fault, its the state of modern medicine. My neuro and I were discussing this whole issue during my EMG/NCS. Hes was complianing because some insurance companies have a separate billing code for the NCS and one for EMG.
He feels that the total diagnostic picture is required and that it would be crazy to only do an EMG without the NCS.

Speaking of EMG/NCS study, mine only involved the tibal nerve root
(calvs) and after three insertion points in each leg, my neuro felt it wasn't necessary to continue in light of the entire clinical picture.

I haven't heard or read anything where bulbar involvement would cause muscle fasciculations in another nerve root and muscle group. Anatomically, bulbar and limb nerve roots are different and if it was seen, it would probably mean that involvement was in multiple areas.

As far as symptoms goes, my face and jaw get tight and tired. It is a very uncomfortable and unrelaxed sensation. It feels that my facial muscles are slow to respond. I also get a thick tongue at times.

My take on this is that BFS (which is considered a mild variant of Isaac's syndrome, neuromyotonia, PNH, and Quantal Sqander) to name a few of the older terms is that the muscle tissue will swell at times. This is one of many common symptoms that has been noted in these variants. Not much is mentioned here about it, but clinically it has been observed since they started seeing this stuff since the 1940's.

Best of Health to You!

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Re: EMG Experiences PLS CHIME IN!

Postby Pole on June 8th, 2004, 6:46 am

SLL wrote:I
1. anyone had an experience like this??
2. I have heard a good EMGer starts out and tailors the test based on what he/she is seeing going along versus sticking every muscle automatically...so at some point, he decided going on would give him no additional info. Heard of this? is this common practice?
3. Anyone know - would they see changes on limb EMG IF bulbar onset. Ihave heard both yes and no.
4. Anyone else have the tight face, burning tongue, feeling like they cannot talk (but no one else notices anything?)


1. what experience? emg - yes, Medical Director of the Forbes/Norris ALS/MDA center in San Fran, and Chairman of Neurology at Cal. Pacific Medical in San Fran..- no, too long way from Poland :mrgreen:

2. I think your Medical Director of the Forbes/Norris ALS/MDA center in San Fran, and Chairman of Neurology at Cal. Pacific Medical in San Fran.. :mrgreen: is a good EMGer

3. After 5 years of twitching there would be a lot of abnormalities in limb emg because you would be propably dead if it would be bulbar ALS

4. I think these sympthoms are stress related

Don't worry, you don't have ALS
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Tight Face

Postby tacketr65 on September 14th, 2004, 5:30 pm

YES! Finally, someone else with a tight face...I have that, too. My eyelids look "sunken" at the end of the day, too. Plus my forehead is very tight feeling. I can relieve it by light massage, so it must be circulation related. I think it is just that the nerves cannot properly control blood vessels & circulation when they are so messed up...my theory. Also, I don't think its in your mind, for what its worth.
My EMG was totally normal, and my follow-up 1 year later! Your normal EMG means you DO NOT have ALS. Now, coping with the BFS will take doing, but that's a much better boat to be in than ALS...fight!
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