I'm sick and suspect ALS

[weighter]

I'm a 47 year old male and have been having mystery health issues for the past 7-8 months.

It started with tremors in my core/trunk/back that were only noticeable when holding myself up or lifting myself. I visited my doctor and he said it's really strange, I wasn't exhibiting any of the neurological issues with eyes or hand coordination or reflexes, but it appears signals to my muscles are being interrupted. He immediately referred me to an internal medicine specialist, who I saw 2 months later. The specialist basically did the same neurological test with my hands and eyes and checked my tongue strength as well. He diagnosed me with essential tremor and will see me in 6 months.

Note, I'm unable to get an MRI due to my pacemaker device.

So as time has passed, my legs are declining they are exhausted and tight, no noticeable difference between either leg but significant twitching only when I crouch.

Muscle tightness hit me hard a few months ago all in my core, legs, and jaws/neck.

My swallowing has changed and feels weird the last few months. I've noticed a few instances where my speaking felt weird like my tongue tip and lips were being clumsy. Today I noticed I can easily physically move my throat structure/bones side to side and they make cracking sounds when I do that. I don't recall ever being able to physically move my throat structure side to side. Is that something that happens with bulbar atrophy?

I know there's something wrong with me neurologically, I'm sick, and the doctors can't find any signs of the obvious culprits. So I'm riding the roller coaster of it's ALS or it's not.

Reading the sticky post made me feel better yesterday, but the throat thing really set me back today.

I have no idea why the specialist didn't order any EMG for me, other than I know the waitlist is 3+ years.

 

[Nikki J]

The specialist was an internist? Or a sub specialist in internal medicine in neurology?

That throat thing doesn’t sound like bulbar als. Overall I don’t think it sounds like ALS.

Three years for an emg? If a neurologist suspected ALS I am quite sure those people would get pushed forward in the queue. Wait times for medical things are bad everywhere but I know other Canadians have gotten tests quickly when it is deemed necessary.

Call or message your doctor and update them and see what they say

 

[weighter]

Thank you for your response. The specialist is only an internal medicine specialist. His appointment was very underwhelming.

I think the reason I was sent to him first is that there's a long 2+ year waitlist for a proper neurologist, and I suspect the internist is acting like a triage measure for them.

So im guessing they want to observe any progression, and elimination of any differential diagnosis candidates before potential fast tracking to a neurologist.