Very scared

[KimT]

Ok, it looks you have a good plan in place. If I were you, I’d try to stay off the Internet until after the appointments. Try to keep your mind off all the what if’s. I know it’s hard but you can do it.

 

[Kfitz]

I will try! It’s been very difficult for me to do that. So, in your experience ALS presenting as jaw issues and difficulty swallowing in a month in a half would be an unusual presentation?

 

[lgelb]

I would really save your money, and possibly health, as regards "all the supplements you can find" relating to ALS. There are few that we would have any reason to think would help, and there are fewer reasons still to think you have ALS.

Sounds like you are getting appropriate testing and as Kim said, we cannot diagnose you from afar. But if the next round of testing is not revealing, as I mentioned earlier, I would see a dentist, and also consider therapeutic massage by an MT with orofacial expertise to undertake symptom relief while the diagnostic process is going on.

It is also worth meeting with a counselor to test the idea that stress relief could play a role. That doesn't mean "it's all in your mind," just that the mind is very powerful and can cross over into physical manifestations of stress.

 

[Kfitz]

Just an update, mri was clean, SLP test FEES test was clean, saw a dentist for the Tmj and a teeth cleaning and they were shocked by my jaw. It involuntarily contracts and moves up and down. When she felt the joints she said something is really wrong. Without me even really having to open my mouth it pops. It’s not painful either. She won’t treat my cavity until she gets the ok from a neurologist because of using a nerve block.. that freaked me out.

I saw a different neurologist at NYU, he was very nice and very confused by my jaw “tremors”. They’ve gotten to the point that if I open my mouth wide my teeth will start chattering. He did not see hypereflexia In my exam, but positive jaw jerk and Hoffmann. Sending me for bulbar EMG. I asked if the teeth could be clonus, he said no. I asked if my jaw was spasticity, he felt around and said no, but he didn’t seem sure.

I have read quite a few articles on UMN issues starting in the masseter, and it presenting with spasms, involuntary jerking, and contractions.. all which I am experiencing.. oh and the teeth chattering. I have cramps in hands and feet still, and fasciculations in legs still. Some twitching in jaw and chin.

Does anyone have experience with this? I am attaching a video of my teeth after simple stretching.

 

[Nikki J]

The video did not work but we don’t allow videos or pictures anyway. Please let us know what the emg shows. Wishing you lots of luck

 

[Kfitz]

Thank you Nikki, all of the many Drs I have seen assure me it’s not ALS, but I just fear it’s too early in this journey for them to give me answers. What do you think of my symptoms? One Dr. went as far as to say ALS doesn’t usually affect the masetter muscle.

 

[Bestfriends14]

No, no, and no. How many doctors and people on this forum need to say "it's not ALS" to you? Why would you not believe so many people?

 

[Kfitz]

I’m going to take that statement and run with it for today. I really appreciate your time. My symptoms are very real and the drs just can’t seem to figure it out. So many things ruled out, and the limbo and unknown are what’s killing me. I’m just having a hard time trusting the drs after reading so many stories of UMN dominant and people getting told no, only to find out, yes ALS. Thank u again. I’ll post after my EMG.

 

[Clearwater AL]

Kfitz, well this has gone onto a second page. From my previous post to you.
"You were told by 3 neuro doctors you do not have ALS,” Three Neuros!!

*A doctor even suggested you see psychiatrist." Did you?

Then...
"what’s killing me I’m just having a hard time trusting the drs" (doctors.)

Apparently you don't trust us either. You are dealing with serious Health
Anxiety... until you have another EMG (how many so far?) consider the
referral of seeing a psychiatrist. At 31 you are just too young to carry
this worrying burden of ALS with so many telling you NO.

If the next EMG says no... will you finally believe it? I hope so... and I hope
you live for another 31 years and 31 more after that.

PS. Until all that... STOP reading stories about ALS.

 

[Kfitz]

Had my second EMG today. They did right arm, tongue, and lip. Can anyone tell me what this poly- few means?

 

[Clearwater AL]

Great news! What ever poly-few means is apparently insignificant to your normal
NCS and EMG.

I truly hope after 3 Neuros saying no ALS and the NCS/EMG report above you can
move on from ALS concern and this forum. You do not have ALS. Congrats !!

 

[Nikki J]

Nothing much. As you can see the doctor considered them normal polyphasic mups are common and in isolation don’t mean anything. They can be found in up to 10% of normal mups according to the aanem ( the professional organization for emg doctors) so as your report indicates a few in any given muscle would be considered normal

 

[Bestfriends14]

Ask your doctor. Your EMG is normal for the second time. Congrats on not having ALS!

Take good care

 

[Kfitz]

Thank you to all of you that have taken the time to respond to me. Unfortunately things have been getting worse for me.

I have violent teeth chattering every time I yawn, cough, or sneeze, and even sometimes walk. Pronouncing words has become difficult sometimes. I’ve been told I sound hoarse or sick and sometimes my volume is so low and I have to clear my throat to produce audible sound. All of the jaw snapping closed and involuntary movements began in February and the first time I had the chattering teeth was early April.

I saw a movement neurologist recently, and he agreed that it’s jaw clonus and possibly a form of myoclonic epilepsy, but he is very unsure. My right hand has started to feel very stiff and I have began dropping things very frequently. I have constant twitching in a small location on my right side chin that is visible and I have widespread twitching multiple times a day. I fear the worst and haven’t seen an ALS specialist apparently. I’ve seen a movement specialist, general neurologist, and a neuromuscular that dismissed me the second I walked in the door. I was told they knew it wasn’t ALS before I even walked in. I am seeing Dr. Daniel McGowan at Mount Sinai in NYC as soon as there is a cancellation and have a scheduled appointment in September if nothing comes to be available. I’ve been in therapy, seeing a psychiatrist, taking antidepressants, and Valium for the jaw spasms. They gave me baclofen when I presented with the jaw tremors and positive jaw jerk. It makes me so sleepy, so I stick to the Valium. My EMGs (not done by an ALS specialist) have been normal minus the few poly MUPs in every muscle. Jaw clonus, jaw jerk, and bilateral Hoffman all noted.

Also—
@KimT I have followed your messages to people and have to say that the amount of courage and respect you have is unbelievable. You are always kind and caring with your words even if people seem worried for no reason, so I just wanted to especially thank you. I know you love your pool and I so hope that you are able to enjoy the things you love.