Undiagnosed

[todd18]

Hello,
I am new to this forum so please bear with me. I am a 43 year old male who started to experience occasional twitching at the corner of my mouth in June. Near the end of August I started with more severe twitching in both my calves. The twitching has continued throughout my body but is most noticeable in my calves and only when at rest. I have been working out 4 to 5 days a week for the past 2 years and have not noticed any weakness. If anything, my workouts are getting better. My weight remains stable.

Blood work requested by my PCP was normal B12, folic acid, electrolytes). Sent me for a brain MRI which showed "non-specific white matter changes".

Local neurologist (not a recognized expert in ALS) did a clinical exam which he said was normal. Exam included reflex tests, walking on toes, walking on heals, pushing against his manual resistance, etc. Blood work was negative for Lyme disease. CK level is recent blood work was 84 which my neurologist said was well within normal range. Neurologist did a NCV and EMG on all limbs and face and he said there was no signs of fasciculation or ALS. He also asked to see my tongue.

That raised a red flag for me and got me worrying about Bulbar ALS. Went back to him for additonal EMG test on my tongue. He stuck me twice under the chin and once on the tongue and found nothing alarming.

He also ordered a spinal tap which was negative for MS and Lyme's.

Since the first EMG and him looking at my tongue, I have an odd feeling in my tongue and feel like words that end in "s" are not coming out of my mouth clearly. This fear of ALS is consuming me. I have talked to my wife about my perceived speech problem and she repeatedly has told me that she has not noticed any slurring. The twitching at the corner of my mouth continues and I have also noticed twitching above my ears.

Also had a thyroid ultrasound done and it showed nodules and an elarged thyroid. Going for a thyroid nuclear test in 2 weeks.

Could this continued twitching be BFS? Any suggestions for next steps for me?

Thank you for your input.

 

[ktmj]

The reason a competent neurologist could not find any symptom of ALS is because you have none of the symptoms. None. Period.

I have had BFS/BFCS for many many years. My money is on that from what you have described.

 

[sadiemae]

Have you read this?

https://www.alsforums.com/forum/do-...you-new-forum-worried-you-might-have-als.html

 

[wright]

I'm actually amazed given your signs and symptoms, and actually, lack thereof . . . you got as many tests as you did. Your worrying must stick-out like a sore thumb and you're making your docs do it out of pity.

Listen, the only symptom you have is twitching. Big freakin' deal. Everyone twitches . . . everyone . . . some people just notice it more than others. On top of that, you tell us that you're getting stronger . . . and STILL you think you have ALS. Do you know what ALS is? Rhetorical question, by the way.

Nothing was found because nothing is wrong with you except, well, a tremendous amount of unwarranted anxiety. Relax and celebrate life. Stop this ALS nonsense and enjoy the upcoming holidays. If you keep on this dark path, you are going to end-up in a very, very, very bad place and for no reason at all.

 

[TedH5]

No weakness = No ALS that is the most important thing to remember. From what you described you have nothing to be concerned with!

Good luck to you!

 

[Alyoop]

Like What wright said, how the heck did you get to have 2 EMGs with absolutely nothing to warrant it? its ridiculous. Talk about Doctors getting loads of money from the insurance companies.
You sound like a classic case of a fit person getting muscle twitches. VERY common and perfectly normal. Relax. and shame on your doctor!

 

[trfogey]

That odd feeling that you've been having on your tongue might be your brains falling through the roof of your mouth. Just as likely as your having ALS at this point, so consider it carefully.

 

[Al]

LMAO TR funny is better.

AL.