EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Postby veryworried123 on May 7th, 2014, 5:35 pm

I'll do my best to keep this somewhat short and summarize as i received a PM's and can't get to all of them right now...so hopefully you will read this

#1 Back from the Nero from my 2nd EMG. Yes i was sweating and yes i nervous. More so than my 1st. I think its because i just knew way too much now. Yes ignorance is bliss. Long story short my anxiety got the better of me just before the EMG and i was twitching like crazy especially when they were half an hour late. He did a Nero exam which came back ok and then did the EMG. I had tons of fasciculation’s even though i wasn't visibly twitching always. He even started to talk about the hockey game to me I think just to calm me down as he saw I was nervous and sweating right onto his sheets. At the end of it he said BFS and then he said if you don’t what it is look it up on the internet. Yes, I’ve done that more than a few times I said. We chatted a bit and I told him I hope I never have to see him again…no offence taken. I’m sure he felt the same way. That was my 7 month “emg check-up” although looking back on it I’ve been twitching for about a year

#2 I travel a lot for work and a few months ago on the way to San Francisco I sat next to a guy who just simply started chatting with me. When I got to find out he was a DR. I though great I get to ask this guy a ton of questions like what do I do about my high-bilirubin among numerous other things. As we kept talking turns of he’s a nero-muscular specialist in SF. Out of all the places this guy gets stuck next to me with nowhere to go. Well considering my Nero doesn’t let me ask more than 3 questions without getting *beep* off I though this is perfect and in all fairness he was great about it. When I told him about my situation and twitching and put away his paper and almost just got ready to get hammered with questions. Unfortunately there wasn't a lot of time left in the flight but I did pull out my cell phone and record a good part of my questions. Here they are (not all word for word or in order but I did my best)

-Does it matter if fasciculation’s show up on a EMG?
-No significance what so ever

-Is there a difference between a twitch and fasculations?
-True fasciculations and twitches is that fasculation showing up on emg, twitches don't necessarily

-Does it matter how much I twitch?
-No

-Does it matter where I twitch?
-No not really

-Does I matter or is it a concern if I have jerks?
-Myoclonic jerks are very common and are more a result of anxiety than anything neurological. However if your finding your having them all the time consistently through out the day and night then its something you should get checked out


-Do we have any info that tells us how long people suffer with bfs on average?
-We do not. It’s different for everyone and its not a highly funded researched field although it is gaining more traction


-Is this something that lasts months or years or forever?
-I would plan on having this is one way shape or form forever

-Do we know what causes it?
-We are 95% certain it’s not viral and about 99% it’s not stress related. There is some evidence that points to a chemical imbalance / sodium but we have nothing concrete and probably never will anytime soon

-Is it doing damage to my muscle or nervous system?
-No

-Will magnesium help or maybe a gluten free diet or maybe massage?
-From my experience no they will not. But if you find something that works for you by all means do it

-When will it get better?
-it does for most. Frequency/intensity will subside hopefully to the point where you don’t notice it as much and it doesn’t bother you and cause anxiety

-Can twitching precede weakness and could it be something more nastier?
-Yes it can but it’s very rare and that’s why we do a follow up

-What’s the time frame for follow up?
-It depends on the situation and there’s really isn’t anything concrete but I typically do 8 months or so

-So then it is true that I or a person has to wait for 8 months or longer after fasciculations start to confirm for sure that this isn't anything nasty?
-Your twisting my words. I said in very rare cases twitching can precede weakness but in almost all of those cases there is something out of the norm that appears on an exam. The most important thing is that you have been told by a qualified professional Nero that your twitches are begnin and once you have been told that we are 95% certain that it’s not anything serious or related to a MND. Now statistically speaking yes twitching can proceed weakness and that’s why I and most dr do a follow up exam but what your referring to is a very low statistical number of a very rare disease and surely something would have it would have shown up on an EMG which is a very specific test. als is a disease of weakness not twitching or jerking or vibrating. I repeat als is a diseases of weakness. Think of it this way. If you weren’t twitching would you have gone seen the dr. Exactly you wouldn’t. People with MND know something is very wrong with them. You aren’t harboring a degenerative illness

-So if pass a Nero exam and emg then I’m 95% safe?
-In my professional opinion yes and if you come back 8 months later with no other issues related to weakness then we are 100% safe to use those words. What you have to realize is that most Nero will execute a clean clinical exam and not even preform an EMG. From a statistical standpoint they are correct I however feel that the EMG is the be all and end all so I perform the EMG and be done with it. It’s really just my preference but once again numerically speaking its overkill yes

-How do we know this isn’t the start of something sinister or will never turn into something nasty?
-Because this doesn’t fit the pattern and we have years of documented proof that prove it

-You’ve heard this all before haven’t you
-Yes I have and I do understand what a mental battle this can be especially if you have anxiety. Not knowing what is happening in otherwise healthy adults, is very upsetting and can be a mental torture

-How much do we really know about BFS?
-Definitely not as much as we should or like too. I for example learned the most from tribal knowledge and my mentor who by the way has bfs and is still fine. Yes there will be times when something bucks the trend but we don’t and can’t look at those outliers because they are statically insignificant. We manage the exceptions

-what about being able to induce twitches?
- having induced twitches is not uncommon and it is often regarded as part of our clinical picture. This has nothing to pathological reflexes

-how can you say 100% safe, how can anyone be 100%?
-we say 100% because if you factor through the math it actually is 100%

-What about CPK levels. Are high levels concerning?
-Well it depends what the levels are but typically no and it’s just one of the tools in our tool kit we use. Trust me I’ve had people clock CPK of 90,000 and been fine
-Did you say 90,000?
-Yes, it was pro weight-lifter that had to be rushed to emergency and undergo dialysis and guess what he went back to lifting and competing. I had one guy break my machine once 38 years ago cause his level were so high. Back in the days you could do that

That’s about all the important stuff I had time for

#3 Big thanks to all the senior members who helped and answered email after email Gary, Double D, Yulisar, Matt and Johnny the Jet and others

Thanks
Last edited by veryworried123 on May 8th, 2014, 10:47 am, edited 1 time in total.
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Postby mwagner on May 7th, 2014, 6:39 pm

Wow, this is a good post and should be made a sticky. You are such a good contributor to the board to have taken the time to record what he was saying. I'm almost 3 years into this madness so I'm not as worried as others, but for the newbies, I think this will be so helpful.

Mitra
mwagner
Saint
Saint
 
Posts: 1066
Joined: August 27th, 2011, 5:15 pm

Re: EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Postby MarioMangler on May 7th, 2014, 7:57 pm

Great post. Although I should point out that there is no new info here and it is exactly what the senior members have known and have been saying on this board over and over for years. Still, it's always nice to see it all confirmed again.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Postby Red Raider on May 7th, 2014, 9:41 pm

Thank you for the post I am one of the newbies and it is always a great and encouraging feeling to read post like this. Thanks to all the vets as well just a few have mentioned they have been saying this for years. Again thank you for the post you have eased my mind and I'm sure plenty others as well God Bless.
Thanks Houston
User avatar
Red Raider
Senior Member
Senior Member
 
Posts: 92
Joined: April 1st, 2014, 1:03 pm

Re: EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Postby leaflea on May 7th, 2014, 11:44 pm

Great job covering all the bases! Thanks for posting and congrats on the newest clean bill of health. After reading this, I will now go to sleep and rest easy being 7 months in.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Postby veryworried123 on May 8th, 2014, 10:44 am

I thought i better record it because I hate trying to remember exactly what was said afterwards...I've sat there countless times after the fact and said what he they exactly say and then things get lost or mis-interpreted

I have adjusted one small comment as i listened to the recording again and wanted to ensure i captured it properly and also added in 1 additional question i forgot to share

Thanks
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Postby christo on May 8th, 2014, 1:29 pm

really great post, it will probably help a lot of new twitcher, thanks for sharing !
christo
Hero
Hero
 
Posts: 349
Joined: October 27th, 2012, 5:04 am
Location: France

Re: EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Postby leaflea on May 8th, 2014, 5:21 pm

Very worried can you tell us what you changed ? I can't find it. I love that he didn't say anything that conflicts with the vast majority of our common knowledge.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Postby veryworried123 on May 8th, 2014, 5:52 pm

all i added was the line above that i asked him how he could be 100% sure of anything...it not often someones says that

maybe he was saying it to make me feel better as he saw i was anxious

btw - yes i'm still twitching hundreds of times a day
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: EMG RESULTS/STUCK IN A PLANE WITH A NERO/BIG THANKS

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 6 guests