NeuroTalk Support Groups - tongue twitches

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - tongue twitches (https://www.neurotalk.org/myasthenia-gravis/200524-tongue-twitches.html)

Quote:

Originally Posted by bny806 (Post 1048384)

most peoples tongues will undulate or twitch when sticking out, especially if strenous or feeling weak.. when they talk about ALS they talk about it twitching at rest in the mouth.. which is actually kind of hard to do - to keep it at total rest in your mouth.. but sticking it out.. is totally normal for it to twitch.. especially when you have muscle weakness....

I was initially told by the 1st dr that he thought I had ALS.. (before an EMG, and I was 30 years old), he had horrible bed side manner.. Life will never be the same from when those words came out of his mouth - just a different perspective on things.. anyhow.. I had slurry speech, swallowing issues etc at the time, so I asked all my friends and family to stick out their tongues I wanted to analyze theirs in comparison to mine haha.. I was freaked out (and with good reason).... I do have a triple furrowed tongue.. I have several family members with it as well, and it can occur in Musk myasthenia and other MG too.. I am 3 years into this fun, and my speech is much better now that it was then - thanks to IVIG..

I have heard of plenty of people with MG, CIDP, and with BFS that have tongue twitching.. Have you had a regular EMG yet? can't remember what you had said- many neuros will do tongue EMG's, but since it is so incredibly hard to have someones tongue be at complete rest it can be a difficult test.. so if they test your cervical (neck) and/or thoracic paraspinous muscles with EMG that is sensitive for bulbar MND/ALS.. I rested much easier when they did that to me (like my 3rd EMG).. and it was also negative.. I had PTSD from that initial dr apt!

I am glad that I found this board and glad for your reply. Yeah when I first seen my tongue I googled it and ALS came up and then I showed my MD. She sent me straight for EMG but only on one leg that was really weak at the time and I sweat out the results so at the hospital when they were doing all of those test. When they talked about another EMG I told them my doctor had already done one. All I could think of was ALS didn't know about mg. Yeah I was getting people in my family stick out their tongue so I could see.

IF they tested your leg when it was weak and it was good, then you should try and forget about ALS (I know easier said than done, since I had a hard time wiping that off my list of fears as well).. but for MND EMG abnormalities show up before you even are aware of weakness... so if you were already weak in a leg that they tested and it's negative, then your good as far as that goes! :) How was your NCV? any abnormalities there?

My tongue was very twItchy when I was hyperthyroid from grave's disease. Have you had your thyroid levels checked?

Quote:

Originally Posted by mimc (Post 1048417)

My tongue was very twItchy when I was hyperthyroid from grave's disease. Have you had your thyroid levels checked?

"Thyroid disease should be vigorously treated - both hypoand hyperthyroidism adversely affect myasthenic weakness . . . infections require immediate attention because they exacerbate MG and can be life threatening in patients who are immunosuppressed."

For more information on MG and the thyroid see: Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - pages 22, 26, 138, and 141.

-Mark-

Quote:

Originally Posted by mimc (Post 1048417)

My tongue was very twItchy when I was hyperthyroid from grave's disease. Have you had your thyroid levels checked?

Yeah I have it checked all the time because I had thyroid cancer in 2001 and yeah after I passed first emg test of the leg I was so happy until I started having slurred speech, couldn't eat and one day I couldn't hold book to read.

I have had the tongue twitching, especially when I first started mestinon. But it settled down when I got used to mestinon. The other time I had it really bad was when I was in a crisis and the neurologist in ICU was having medical students look at my tongue because apparently, it was dancing a jig. At this time I was unable to even roll over in bed, speak clearly, etc.

Quote:

Originally Posted by limpy (Post 1048523)

yes mine was during a time when everything was going on.