Status
Not open for further replies.

suzannj

Distinguished member
Joined
Jul 5, 2008
Messages
121
Reason
Learn about ALS
Country
US
State
NY
City
Buffalo
Hi Everyone,
Something fairly new has been happening to me lately, and it's very disturbing so I was hoping for some feedback.

I had never had fascis in my tongue and had never looked for them either. However I've been having episodes where my tongue, cheeks, jaw, and upper neck area feel extremely fatigued. If you've ever been to an event where you have to smile a lot, and find yourself rubbing your face because it's "tired", that's pretty close, and when eating my tongue feels like I've been chewing on a tough steak for hours. I also feel like my throat is tight / closing and get relief only by hyper extending my neck/jaw toward the ceiling. All of this led me to the mirror, and low and behold, my tongue is now twitching too.

Of course, my other body-wide twitching has not let up, my right leg continues to be fatigued, still having myclonic type intermittent jerks, now with an added benefit of tremors in my left leg and right arm (but only in certain positions).

Two neuros, two clean EMG's (although bulbar area was never tested), and no official diagnosis either.

Thanks for any feedback on this,
Suzann
 

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
City
Redneck
If it helps suzannj, the rest of us undiagnosed Limbolanders notice stuff regularly too. Sorry you're having a bad day - focus on the blessings of life - that's what gets me through.

Take care...
 

planningguy

Senior member
Joined
Jun 5, 2008
Messages
556
Country
US
State
Wyoming
City
Sheridan
Suzann,

I am sorry you are having a rough time and empathize with the title of your thread. Some days I can take on the world, and others it seems like I'm having my rear end handed to me. My current diagnosed is limited to pernicious anemia (chronic B12 deficiency), but your neck symptoms seem very similiar to mine.

I initially got relief from my neck pain by looking up until my the base of my skull almost touched my shoulders. It seemed to help my swallowing a bit too. Since that time the soreness has spread to my shoulders and arms so the neck is not so much of an issue, although it will occasionally give me grief. My last EMG, which included one spot on my neck, was clean.

I have heard from other members on this forum, as well as read, that Myasthenia Gravis can cause the sore jaw and facial soreness problems you describe. Tongue twitching can occur for a variety of reasons, and their are abstracts online with it occuring in both MG (albeit a rare example) and CIDP.

I hope you feel better. Its rough being in this spot. I thought the holidays would make it better, but I've been stressing about spending money (with the goofy logic that maybe I'll get crappy news in February or March and regret it), even though our finances are the best they've been in ten years of marriage.

Take heart. You have support here. Hopefully you'll have better answers soon.

Best wishes,

Robert
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
suzann

Hi, hang in there! I have these days, more than I would like to admitt. It usually is when 'something' new is noticed or felt.

Your tongue twitch may go away. I had one in June and it was after a night of golfing (drinking) and it was all night. I woke up and showed my husband, it was twitching on the tip, it did not look like what I see the those other fasic's look like. Anyway, my husband said 'who cares about that twitch, why does your tongue have those grooves"? ( i have a scallop tongue) I never got that twitch again, knock on wood. I cried the next day thinking it would stay and it did not. I saw an ent a few months later and he looked on and in my throat and said he saw no fasics or vocal cord atrophy etc. My als doc did not seem to think my tongue was a big deal and said that the marks are teeth marks....I 'think' I read somewhere that if your neck is weak, your tongue can get pushed up and my tongue is always pressing up against my teeth. And I have a weak neck and some buldging disc's in my cervical region.

So, give it time mabye that tongue twitch will go away. But I do know how you feel, I felt the same way.

Take care!

Aprill
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi Suzanni ... Most tongue fasciculations are benign. Neuros check the tongue for fasics while it's resting in the mouth, because almost everybody has a little twitching when they stick their tongue out.

This does not sound like bulbar onset to me. Usually slurred speech, then swallowing, are signs of bulbar involvement. Hope you get an answer soon.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Suzann,

Well, welcome to, "Feeling Crappy Land" and "We Don't Know Why World".:D

Hey, at least my B12 checked out normal and I'm not anemic, either.:wink:

It is amazing, the myriad of things that could possibly go wrong / be wrong with our bodies. It seems like one part of the body is trying to pull the plug on another part, sometimes. Like the muscle tissue in the leg saying to itself, "Hmmm, lets see how bad we can make this guy feel today by firing up the fascics and turning up the cramps!"

I'm trying to program my brain to more effectively commuicate with my arms and legs. I've been trying to send messages in plain text and morse code that say, "Stop the crap! Stop the crap!" (sigh...) So far, it doesn't seem to be working but, I am undaunted! I'll let you know if and when there is a break-thru.

In the meantime, shucks! Wish my pinched nerve would straighten up!

Zaphoon
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Shucks and double shucks, Kim ... All kidding aside, I'm so sorry this is dragging on and on like this. If only positive thinking could cure us, you'd be home free.

What's your next step?
 

lydia

Senior member
Joined
Jan 25, 2007
Messages
677
Country
US
State
ny
City
buffalo
Hey Suzannj,

I am sorry to hear about the latest developments; I can see why you would interpret their arrival as something ominous...twitching in the tongue seems especially scary to me whereas my body twitching never bothered me. I know I have mentioned the possibility of Parkinson's to you before and here again I wonder about it some more. I have read on the PD forums where posters describe their face area as stiff...and then others describe difficulty chewing, where their mouth gets tired. I don't remember if the two symptoms were experienced together...I didn't pay attention at the time since I wasn't experiencing that. Try to keep your spirits up...remember: the more clues, the more likely your doctor will figure it out! Did you call her by the way? I see my new guy next week.

Lydia
 

suzannj

Distinguished member
Joined
Jul 5, 2008
Messages
121
Reason
Learn about ALS
Country
US
State
NY
City
Buffalo
Thank you all so much for replying. Amazing . . . .you feel worried, desperate, and reach out on the internet to a group of people you've never met, and low and behold within minutes a series of comforting replies and the feeling of being surrounded by friends who care and know what you're going through. It's truly awesome.

((((Suzann))))))
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
Suzann,

it is awesome, and I was having a bad day that day too. So, I need all those words as well! I am doing better today, we will see what tomorrow brings!
 
Status
Not open for further replies.
Top