Whats the chance of this being ALS, any other possibilites?

[SwingPusher]

A little over 2 months ago I started to get muscle twitches over most of my upper body.  About the same time I noticed my swallowing was not as strong as it used to be and talking seemed to take more effort.  I also felt a little tongue tied as at times my tongue couldn't keep up with some connected sounds in words.  Like something with lots of t's and d's.

I went to the doctor and he said my left leg seemed smaller than my right leg.  I've had no issues with my left leg, regarding falling etc, but I've noticed it felt was weaker over 4 years ago. I had physio on my right knee 4 years ago and the guy said, my left leg was slightly weaker when doing initial tests.

I have been to a neurologist. He did plantar reflex (babinski reflex) and it was fine, my toes had no reaction which is apparently seen as normal.  I had a normal jaw jerk reflex and I have no reaction to the hoffman reflex which is apparently normal.

He did say I had spasticity in my left wrist in my left wrist.  He basically grabbed both wrists and shook them. He also said there was some tightness on my left leg. He also said it looked like there was atrophy in left leg and some on my left shoulder.

There is no clinical weakness. I passed all the resistance tests and I've had no problems opening jars etc.

Walking, I feel fine.  For years (over 5 years) my left leg has felt a little strange, a little floppy or heavy at times and I sometimes get a tickling sensation when I put my foot on the ground.  I have had days walking over 10 miles and my left leg never felt more tired than my right leg.  Its only when doing things like leg squats that I can feel the difference between legs.
I have some days when my leg feels a bit wobbly, but not caused issues and other days when it feels perfectly fine.

I had a blood test.
My CK level was slightly elevated. Standard my age is ck of 350 and mine was ck900. Exercise can elevate it and cause it go into the thousands.

The blood test also showed I had slight neutrophilia.

I have had an MRI scan which I was told was clear.  But in a copy of the letter to my doctor said it recorded very slightly high energy level in some brain tract.

I have had an EMG and that report this is the conclusion:
"The only abnormality noted in the EMG examination is the presence of fasciculations in distal and proximal limb muscles and in cranial innervated muscles. The nerve conduction parameters (including F-waves) are completely normal."

The test detected no reinnervation or fibrillations in any of the muscles

This report was sent back to my Neurologist and he said he thinks its MND / ALS.

Is this enough to diagnose Motor Neuron Disease or ALS?

[SwingPusher]

I have my first clinic appointment next week. So far my leg and arm weakness has not got worse, if anything it feels better at times.  Some days my arm will tremor reaching for things other days its solid. Yesterday I walked over a mile with carry bag with 10 litres (about 10kg) of drink, in my left hand. I would occasionally do 5-10 biceps curls with the bag. I just wanted to test myself.

My swallowing is not great but is very manageable.
The major concern for me is my voice.  I get hoarse easily. I ask people if it sounds strained and they say no, but I can feel it. Im also getting very irritated very easily.

I do have issues with repetitive sounds which need end of tongue movement like t and d but if I prep myself I'm usually fine. I naturally talk very fast but I basically slow to a normal speed I cope fine.

I have questions for the neurologist when I see them next week.  I was told the EMG showed denervation (muscle nerves dying) but no reinnervations (nerves trying to regenerate)

I have been reading how to detect devervation from an EMG.  The main ways are, detection of fibrillations and those fibrillations have a positive sharp wave form.

My EMG report has a table of the 12 muscles tested. Under the heading fibrillations they all say none.  The next column titled +Wave(positive wave) they are all listed as none. The next column is fisctulations and it says "some"

I'm no expert but my understanding of the results don't match the conclusion.given to me by my neurologist.  I don't know if he is basing the denervation of the visible muscle wasting of my left arm. But I favour my right a lot due to a injury to my left shoulder many years ago. Even squeezing things in my left hand causes pain in my left shoulder.

Lots of questions  for when I see them on Tuesday. If you want o can post what happens and how I got on.

Thanks for reading. Getting my thoughts out in words is therapeutic.

[Texashere2023]

Do you have any update?

[Texashere2023]

It seems like your EMG was clear besides fasciculations or did I read it wrong? I’ve read that fasciculations are not a diagnosis of MND. Will you get another opinion? I’m so sorry you’re going through this.

[Sara_MHModerator]

Hello and welcome to the forum. Very sorry to hear you are going through this. It sounds like you have been quite diligent working with doctors to try to understand what is happening. You have a lot to indicate that if you do indeed have ALS that it is early. https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/diagnosis-treatment/drc-20354027  This is a full guide on ALS. What kind of treatment are they recommending at this point?