Should I be concerned?

[Ryan_]

First I just wanted to say thank you to all the people who take the time to answer all these questions as a possible ALS diagnosis can be incredibly taxing but you take the time to put people at ease or push them in the right direction so thank you for your effort.

My journey started with noticing a twitch in my chest that escalated quickly to my entire body, but mainly on my right side. I instantly was reminded of a time somewhat recently that my right arm, mainly in the tricep was considerably weaker than my left and I was having some trouble writing, so my heart started racing when I looked up the symptoms. Then other things started to pop up, dizziness, tingling in the fingers and cramps.

I was able to see a neurologist and the EMG and Nerve test came up clean. So I moved on…but only for a few days, because new things popped up. The nerve under my armpit and chest started buzzing or just feeling uncomfortable, becoming more noticeable as the days went on, and spreading to my shoulder, this made me uneasy, because I didn’t do anything to explain this new feeling, also I go to the gym to move past these issues but then I can’t lift nearly the same weight, the weakness is affecting more muscle movements, balance issues, and I don’t have the same grip strength.

Also I started having issues with swallowing, having to swallow twice, feeling like the mucus isn’t going all the day down, also involuntary muscle movement, which has me somewhat concerned again, because everything seems to be getting worse.

Questions:

1. If it’s not ALS does anyone have any advice as to where to look for answers?

2. How often are EMG tests Clean, then dirty months later? The only reason I ask is because the test were done only a few weeks after symptom onset.

I realize these aren’t simple questions but any help would be most appreciated. And again thank you so much for taking the time to read this and help me make sense of what is going on with my body.

 

[fjay]

Please read this - particularly the section on whether an EMG can be done "too early"...

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

 

[lgelb]

1) I would return to your PCP as this sounds systemic if anything. If s/he is not up for working you up, find another one. There are also many qualified NPs and PAs if it is hard to get into an internist's.
2) You had a lot of muscles tested. If you had symptoms as you have described due to ALS, there would be signs on the EMG. Full stop. But you do not describe ALS.
3) I would video your sleep to make sure it's restful, and re-evaluate all your support surfaces, like bed, chair, sofa, car seat.

 

[Ryan_]

Fjay, Unfortunately I did catch that link after I posted this. thanks for the link though!

 

[Ryan_]

UPDATE:

Okay, so it’s been 5 weeks or so since my clean EMG (May 17th), however, my symptoms continue to get worse.


May 20th - June 29th:

• muscle wasting in the chest (as noted by GP) and tremors

• Noticeable muscle tightness throughout the body and loss of some sensation in the back

• Stomach muscle wasting.

• Right glute, specific twitches, leads to pain, and muscle weakness, not sure if atrophy but my guess is yes

• Fingers group together when rested (pink, index, middle)

• Loss of muscle tone in the back

• Cramps from most stretching

• More pronounced twitching at rest

• Blurry vision - needed to get glasses recently

• However, I have no clinical weakness, I’m still pretty strong throughout the body but have noticed more weakness recently.

Trying to make sense of this, has anyone seen all of this in any other disease?


My GP referred me to another neurologist because he said he’s never seen anything like what I have. Still, this community is pretty in tune with Neurological issues so I figured I’d see if this is something that’s come up in the past.

 

[lgelb]

Something like a mitochondrial myopathy or another mitochondrial disorder is possible. There are a lot of possibilities, and, of course, we cannot diagnose you from afar. I would ask the 2nd neuro what s/he thinks is still on the table and how it should be ruled out. If there is suspicion for mito disease, they would typically refer you to a medical geneticist.