Question

[PaulDavid]

Hello. I was here a few months back. I had widespread twitching and perceived bilateral arm weakness. I saw a neurologist, had an EMG, and everything was given the all clear, minor carpal tunnel in both wrists. I went for a follow up and the carpal tunnel had improved. I’ve developed a serious case of health anxiety - I’m seeing a psychologist, the past week the twitching has started in my face and occasionally tongue, if I tap my temples my eyebrows jump, and my tongue feels funny, numb, rough, I feel like my speech is affected. Should I go see the neurologist again? Or is this me looking for constant reassurance, he’s told me I’m ok. This tongue thing is really scaring me. Thank you, David.

 

[Nikki J]

You stated on August 16 you had a four month follow up scheduled which is now. Did it get canceled?

However, this doesn’t sound worrisome for als to me. If your speech is affected your family will soon tell you but I suspect hypervigilance

 

[PaulDavid]

I had the follow up in October, rather than December. Thank you.

 

[PaulDavid]

Hi. Since my last post my swallowing has been laboured, food not going down easy - feels stuck, no appetite, I have to blow my nose after drinking. I have a lot of post nasal congestion and phlegm, discomfort, especially after eating since the summer. My EMG in august was clear, I had a follow up in November - no EMG, NCS that showed improvement in the carpal tunnel seen in August. As the EMG was only in my limbs, where I do have widespread fasiculations, is their any reason to ask the neuro to run another EMG? they were not at all concerned, and my PCP even said “long covid?” But this isn’t presenting like ALS. The swallowing thing scares the living daylights out of me. Happy New Year to the moderators.
David (I’m 43, p.s.)

 

[lgelb]

Have you/your PCP considered an allergy battery? Lack of appetite if you are swallowing mucus in sleep/secondary to a food allergy is not uncommon.

If the allergy panel is clean, it could be then time to see an ENT to rule out a lesion or other disease.

Are your furnace filters clean? Have you ticked all the boxes for good sleep hygiene?

I don't see any cause for another EMG, no.

 

[PaulDavid]

Thank you lgelb, I really appreciate it. I have just read SO much and I suppose my brain keeps linking what I’m experiencing, to what I read. If this was bulbar, or psp, can I trust the EMG? The facial fasiculations are just very triggering, especially with my tongue feeling strange, and the other issues I recently mentioned. I will say - considering that this started with perceived limb weakness, and widespread fasiculations, which have been examined, it would be a total fluke if it’s been bulbar all along. Anyways, thanks again. I will stop reading any further. David.

 

[PaulDavid]

Hello, I’m going to my PCP this week to discuss my sinus, swallowing discomfort - symptoms. I reached out to the neurologist I saw / who sent my Dr. a letter saying he sees no reason to see me again - even having been informed of the new symptoms. This was a relief in many ways, but I worry the EMG on limbs may not have been sufficient. This is just that - a worry. I’ve seen here that this is a common progression in anxious folks, also reassuring, but the fear is real. Is there any benefit in pushing for another referral for EMG? I see here that many people aren’t reassured after numerous visits, I don’t want to be one of them. Thank you.

 

[Clearwater AL]

.You reached out to the neurologist you saw who sent your Dr. a letter saying
he sees no reason to see you again.

What great news concerning ALS.

You see here that many people aren’t reassured after numerous visits,
you don’t want to be one of them.

Well.... ? Here you are as one.

 

[PaulDavid]

This is the complete truth. I appreciate your honesty.