New Symptom, completely freaking out!

BFS Online Support Group

Moderators: JohnV, Arron, garym

New Symptom, completely freaking out!

Postby Nathan75 on March 9th, 2015, 1:26 pm

Hi to everyone.

Ok, so, 4 months ago i had my second EMG (9 months after my initial symptoms started) and after i got the 'clean' results i promised myself i would no longer worry or panic about the ongoing symptoms i was having and try to get on with life the best i could.
But over the last few days i have developed a new worrying symptom that has made me panic, i feel really scared, and my anxiety levels have hit an all time high

It all started 4 days ago. I was eating and i accidently bit my tongue. I went to the mirror to examine my tongue and i noticed the very tip of it very finely twitching. I started to move my tongue around with my fingers and my whole tongue started twitching. Since then i have been examining my tongue and every time i flick it/hit it/ or press it against my teeth (i know, i shouldn't self test) my tongue starts to twitch like crazy in many different locations. The twitches are hard to explain, but the best way to describe them is like a flickering/flutter type of twitch which makes a small dent in the location of the twitch, but once the twitch stops the dent disappears and the tongue returns to normal. the twitches feel like a slight pull to the tongue, but sometimes i don't feel the twitches but can definitely see them. The twitches are all over the tongue, but the majority of them are on the sides of the tongue. I would say that each twitch last approximately 2 to 5 seconds. I am very concerned also because the phlegm/mucus problem that i have been having over the last few months has not subsided, and i also continue to have some throat/neck pain.

Along with this new symptom i continue to have many other symptoms:

Intermittent random bodywide twitches (some days worse than others), Buzzing/vibrating in legs, Pain/cramps in various places, Pins and Needles in feet/legs/arms/hands, limbs falling asleep easily, and some bowel problems.

Most of the above symptoms i've mentioned i can just about cope with as i've had most of them now for a good part of a year, but this new tongue symptom is really really worrying me.

I know many here have tongue twitches, but my question is: Has anyone else here ever had their tongue twitching strongly when they flick/hit it? And should i be concerned?

I plan to visit my Neuro in the next 10 days.

Many thanks.

Nathan.
User avatar
Nathan75
Member
Member
 
Posts: 20
Joined: April 29th, 2014, 11:57 am
Location: London, UK

Re: New Symptom, completely freaking out!

Postby Yuliasir on March 9th, 2015, 1:31 pm

No this is not a reason to panick becasue many fellows share the same symptom. If you do the search, you could see it.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: New Symptom, completely freaking out!

Postby TwitchyDoc on March 9th, 2015, 2:39 pm

Are you sure the tongue is completely relaxed and lies on the floor of your mouth? I have seen so many people claiming how bad their tongue twitches..only to find they have normal tremor/movements.

And even if those are real fasciculations, it does not mean necessarily it is a bad sign. Actually last year (if I remember correctly) I saw a very first book mentioning peripheral nerve hyperexcitability as a cause of tongue fasciculations. Talked to prof. Pamela Shaw who tends to agree that our view on this problem will evolve.

Everyone bites their tongue from time to time...and cheeks. Then it got swollen and you will bite it again :)
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: New Symptom, completely freaking out!

Postby Nathan75 on March 10th, 2015, 1:34 pm

TwitchyDoc wrote:Are you sure the tongue is completely relaxed and lies on the floor of your mouth? I have seen so many people claiming how bad their tongue twitches..only to find they have normal tremor/movements.

And even if those are real fasciculations, it does not mean necessarily it is a bad sign. Actually last year (if I remember correctly) I saw a very first book mentioning peripheral nerve hyperexcitability as a cause of tongue fasciculations. Talked to prof. Pamela Shaw who tends to agree that our view on this problem will evolve.

Everyone bites their tongue from time to time...and cheeks. Then it got swollen and you will bite it again :)


Yes, these twitches on my tongue are 100% real fasciculations. When i either flick my tongue or hit it with medium force my tongue will go absolutely crazy each time for just a few seconds, then it goes back to normal. This also happens when i pinch/squeeze it.
I have spoken today over the phone to my local doctor who says this is nothing to worry about and says its all part of what my Neuro has recently described me as having... 'peripheral nerve hyperexcitability'.
These words unfortunately have not calmed my fears. I will see my Neuro again next week. Hopefully he will give me piece of mind.
But the worrying thing for me is that i keep getting cramps/pain is various places, and just recently i have been getting some sharp pain in my ear, jaw, neck and throat area, along side the constant mucus and phlegm.
You would think that after 13 months of symptoms i would have learned to relax about things by now, but this new tongue symptom really has pushed me over the edge.
I know that Bulbar *** does not usually start with leg fasciculations (that was my very first symptom in February 2014), followed soon after by bodywide fasciculations, but all these throat symptoms i'm currently having + this new tongue symptom is really making me fear the worst.

And thank you kindly Yuliasir for your reassurance.
User avatar
Nathan75
Member
Member
 
Posts: 20
Joined: April 29th, 2014, 11:57 am
Location: London, UK

Re: New Symptom, completely freaking out!

Postby js1 on March 10th, 2015, 7:38 pm

I have this exact same thing. Have had it for years, and it's nothing. If you have nerve hyperexcitability, flicking a muscle is going to elicit twitches.
js1
Member
Member
 
Posts: 44
Joined: July 29th, 2013, 9:31 am

Re: New Symptom, completely freaking out!

Postby Nathan75 on March 11th, 2015, 9:19 am

js1 wrote:I have this exact same thing. Have had it for years, and it's nothing. If you have nerve hyperexcitability, flicking a muscle is going to elicit twitches.


Thank you kindly js1 for your reassuring words.

There are no visual signs that my tongue has changed shape in any way. Everything looks normal, and i can move my tongue around my mouth without any problems at all. I have no eating/drinking problems, but i do continue to have lots of pain, plus mucus/phlegm issues. I guess just seeing my tongue go crazy after flicking it each time just freaks me out a little.

Anyway, i have an appointment next week with my Neuro. I'll report back after i've seen him.

Take care.
User avatar
Nathan75
Member
Member
 
Posts: 20
Joined: April 29th, 2014, 11:57 am
Location: London, UK

Re: New Symptom, completely freaking out!

Postby mwagner on March 11th, 2015, 11:36 am

I have noticed that anytime I injure myself, I have more twitching in that area. I think it's the inflammation. So, if I have a bruise on my arm, my arm starts twitching more. I'm guessing the same thing is happening with your tongue. You bit it, it's inflammed, and it's twitching more than usual. Try not to worry. For some reason, we're all so freaked out by this specific area twitching, than others.
mwagner
Saint
Saint
 
Posts: 1066
Joined: August 27th, 2011, 5:15 pm

Re: New Symptom, completely freaking out!

Postby Nathan75 on March 27th, 2015, 1:18 pm

Hi everyone. Hope everyone is well.

Ok, so i have seen my Neuro last week.

I showed him my easily induced tongue fasciculations and he said they were most definitely fasciculations, but because i have no other 'issue's' to go with it - i.e eating/drinking problems he said that he was not too concerned. I've already had 2 EMG's (one was after 3 months of initial symptoms) (and the other one was after 9 months) and both were ok, but he has ordered me to have another one done which will include the Bulbar area. I'm now just waiting for the date of the EMG. It should be carried out sometime next month (14 months after initial symptoms). I'll report back once i get the results.

Just as a side issue, i was just wondering how many people here can easily induce their twitching? Just recently i have been able to induce twitches very easily just by turning over in bed, Stretching, laying or pressing against a muscle. Also i've noticed that i can set off all kinds of twitches just by sneezing!? Sometimes it's my eye's that twitch after sneezing, other times its my ribs, stomach etc etc. Is this concerning? And can anyone else relate to this?

Take care all.

Nathan.
User avatar
Nathan75
Member
Member
 
Posts: 20
Joined: April 29th, 2014, 11:57 am
Location: London, UK

Re: New Symptom, completely freaking out!

Postby Ghayes420 on March 27th, 2015, 4:57 pm

I am identical to you. 3.5 years into this and I can start a firestorm of bodywide fascics by either just simply stretching and moving or sneezing or having hard sex. Every single burst of any physical exertion causes my muscles to randomly fasciculate.
Your tongue EMG will be normal as will the rest of your EMG/NCV. Bank on it.
-Greg
A very proud fasciculator since 8/14/2011. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

Re: New Symptom, completely freaking out!

Postby misterjuanperalta on March 27th, 2015, 7:03 pm

Your symptoms are very similar to mine. My tongue symptoms too. But, after eating or exercising my tongue, rapid left to right movements slow down or become difficult. That scares me.
misterjuanperalta
Saint
Saint
 
Posts: 516
Joined: August 21st, 2014, 7:27 am

Re: New Symptom, completely freaking out!

Postby Nathan75 on March 27th, 2015, 7:17 pm

Ghayes420 wrote:I am identical to you. 3.5 years into this and I can start a firestorm of bodywide fascics by either just simply stretching and moving or sneezing or having hard sex. Every single burst of any physical exertion causes my muscles to randomly fasciculate.
Your tongue EMG will be normal as will the rest of your EMG/NCV. Bank on it.
-Greg



Hi Ghayes420.

Cheers for your reply. It certainly made me feel better.
It's very reassuring to hear that i'm not the only one who can induce the twitching this way. I do remember when this all first started for me in February 2014 the first couple of months or so my legs would twitch whenever i leaned on them in bed/or put weight on them, but that seemed to calm down somewhat after a while, although of course the body wide twitching has never completely ceased.
Even now i continue to have random body wide twitching on a regular basis, some of them are thumpers, some are ripples, and some are machine gun type ones, but these last few days especially have been quite challenging because i only have to slightly move and some place on my body will start twitching. For instance... if i lay on my left side in bed then my left leg or left side of stomach will start to twitch, if i pull my legs up tightly to my chest then my calves will start to twitch, and when ever i clench/flex/stretch any muscle on my body it will often twitch. Other than this its the usual 5 seconds of twitching somewhere on my legs, followed by a short break.... then 10 seconds of twitching on my stomach, then a short break... then twitching on my neck... then a short break.... then another few seconds of twitching somewhere on my face/head... and so on and so on...! Does it ever end? :roll: Also i've come down with a bad fever these last 2 days and i'm sure that hasn't helped the situation in any way, and its certainly made the phlegm/mucus issue i've been having a lot worse.
Anyway, i hope you're right about my upcoming EMG. I'll come back next month with the results.
Take care of yourself.

Nathan.
User avatar
Nathan75
Member
Member
 
Posts: 20
Joined: April 29th, 2014, 11:57 am
Location: London, UK

Re: New Symptom, completely freaking out!

Postby Nathan75 on March 27th, 2015, 7:24 pm

misterjuanperalta wrote:Your symptoms are very similar to mine. My tongue symptoms too. But, after eating or exercising my tongue, rapid left to right movements slow down or become difficult. That scares me.


Hi MisterJP.

Have you had an EMG to find out the cause of your tongue issues?
User avatar
Nathan75
Member
Member
 
Posts: 20
Joined: April 29th, 2014, 11:57 am
Location: London, UK

Re: New Symptom, completely freaking out!

Postby misterjuanperalta on March 28th, 2015, 4:55 am

In Nov. 2014 and clean then. I suspect it may be dental treatment related. Not so sure now.
misterjuanperalta
Saint
Saint
 
Posts: 516
Joined: August 21st, 2014, 7:27 am

Re: New Symptom, completely freaking out!

Postby Nathan75 on May 11th, 2015, 2:01 pm

Hi to everyone.

Well guys, i'm finally back with the results of my 'third' EMG, and i'm pleased to say it's good news.

Ghayes420... you guessed my EMG results would be fine... and you were correct :)

EMG RESULTS.
****************

Right Deltoid: No spontaneous activity, No fibrillations. No positive sharp waves. Individual motor units of normal appearance. Normal recruitment to a full pattern to 3mV.

Right Biceps: No spontaneous activity, No fibrillations. No positive sharp waves. Individual motor units of normal appearance. Normal recruitment to a full pattern to 3mV.

Right Rectus Femoris: No spontaneous activity, No fibrillations. No positive sharp waves. Individual motor units of normal appearance. Normal recruitment to a full pattern to 3mV.

Right Tibialis Anterior: Occasional fasciculations, No fibrillations. No positive sharp waves. Individual units of normal configuration. Normal recruitment to a full interference pattern to 3mV.

Right Rectus Abdominus: No spontaneous activity, No fibrillations. No positive sharp waves. Individual motor units of normal appearance. Normal recruitment to a full pattern to 3mV.

Tongue: No spontaneous activity, No fibrillations. No positive sharp waves. Individual motor units of normal appearance. Normal recruitment to a full pattern to 3mV.

Comments:
Normal nerve conduction studies. Occasional 'simple' fasciculations are seen, but there are no overt neurogenic or myopathic changes.
No new findings were found since the two previous EMG studies.

:) :) :) :)

*******************************************************************************************************************************************************************************


Just a quick report of how my symptoms are today, 15 months after they first started...

I'm still getting random bodywide twitching, including tongue... (some easily induced) (some days many twitches, other days only a few), Ive actually had a big twitch in my back for around 7 months now and i don't have to do much to set it off, i.e - leaning on a chair/laying on my back, or coughing usually sets it off. Buzzing/vibrating/shaking - mostly in legs. Tremors. Pain/Cramps. Constant Phlegm. Paraesthesias. Oh, and at times i still suffer with the dreaded Anxiety!! ...(all part and parcel of BFS i guess)! :x

*******************************************************************************************************************************************************************************


Every EMG i have had i've feared the worst because my twitching/symptoms really have been bad at times, and i felt my symptoms were progressing. But each time the results have been good, and with each passing day i'm now beginning to believe that this really isn't what i've been fearing.

Nathan.
User avatar
Nathan75
Member
Member
 
Posts: 20
Joined: April 29th, 2014, 11:57 am
Location: London, UK

Re: New Symptom, completely freaking out!

Postby leroyb on May 11th, 2015, 2:51 pm

Great news Nathan :D
leroyb
Selfless giver of time
Selfless giver of time
 
Posts: 130
Joined: April 26th, 2014, 4:41 am

Re: New Symptom, completely freaking out!

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 4 guests