Has anybody have their tongue twitch from muscle weakness. I was brushing my teeth and I noticed my tongue twitch when I stuck it out and this is when my muscles were really weak. I put it in computer and ALS come up and I was so scared and could not sleep. My tongue does not twitch now but it did at the time only when I stuck it out. It did not twitch in my mouth at rest. At this time I was having a lot of muscle problems and ended up slurring my words. I was just wondering if anybody else have this or noticed it.

YES! Another classic MG symptom. I'm not a neurologist, I only play one on the Internet, but I think you have MG, even with a negative blood test.

One early symptom of MG I had, but did not know, was that a few times it took more energy to close my eyes, than to keep them open. It was subtitle, but it was real. Never told my doctor. Thought it was a friction thing and got some eye drops.

-Mark-

So you have had the tongue twitches?

Not twitches per se, but rather an extremely weak tongue and with little or no ability to move food around my mouth with it. But that does not make a difference. Each of us will have similar, not exact symptoms. They don't call it the "Snowflake Disease" for nothing, each is unique.

-Mark-

I have that when really weak. Technical term is fasciculation.

Yes I understand that everyone does not have the same symptoms. I guess I just was hoping someone else would say yes so I could right it off as a symptom of mg and nothing more serious, not that mg is not serious because it is.

Make a list of all the symptoms you know to be MG. Ask the doctor why he is waiting. People can have MG with no concrete test results. That's why so many go undiagnosed for so long. I was luck. I had a positive blood test.

Ask your doctor not to wait until you have a major MG crisis event to start treatment.

See the fax I sent to my doctors to motive them. It is in the following thread, although you my have already seen it:

http://neurotalk.psychcentral.com/thread200357.html

I was astonished how quickly my doctors moved after receiving that fax. I did not even need to CC the fax to my fictitious brother-in-law Vinnie Boombatz, the noted malpractice attorney.

-Mark-

They have done test for everything else first so I am waiting for my insurance to approve me going to the other neuro that my neuro wants me to go to. I think my insurance does not know what to think since they have done all of these test and they were neg. I just had low blood and low potassium. Which I have had low blood for years and had gotten worse because I could not chew meat.

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!

In my case, slurred speech does not adequate describe my condition. For me the words stick in my throat; I cannot get them out. My dad used to say that someday I would "choke on my words." Dammed if he wasn't right.

I been on high doses of Preds for nearly 3 weeks and my speech is excellent, altogether if I talk to long it becomes a bit labored. I know I will probably lose some ground when reduced to maintenance levels, but any improvement is most welcomed.

-Mark-