Concerned for MND

[Tree123]

Hi All,

I am 29 / male and am very concerned for ALS or some form of MND. I recently have started having some perceived weakness in my arms (felt more on the left) and started having twitches in my arms and sometimes in my legs early last month. I went to my PCP today, and she told me that I had absent reflexes in both arms and legs. She is running some blood work but has suggested I see a neurologist for further evaluation. I am nervous that the weakness in my arm coupled with the absent reflexes in both arms and legs are suggestive of either ALS/PMA (which I see now is basically ALS presenting with LMN symptoms first).

The absent reflexes (listed as zero for both legs/arms) and coupled with the weakness in the arms is really scaring me. Really nervous to see neuro in the next two weeks. Would appreciate any suggestions or thoughts on if this may be ALS or PMA.

 

[Nikki J]

To jump to mnd based on this is quite a leap. In PmA the decreased reflexes correlate with weakness. If someone had totally absent reflexes due to pma I would expect them to be paralyzed or at least significantly impaired.

Absent reflexes all over sounds like possibly systemic like thyroid or maybe even examiner dependent. Or maybe it is you. How were reflexes before. Peripheral neuropathy is another candidate explanation

 

[Tree123]

Thanks for your response. My reflexes have never been an issue in the past. I found the below notes in a previous EMG exam for my legs I had in late 2021 for numbness I was experiencing at that time (which has since resolved): "Deep tendon reflexes were reduced at the knees and normal at the ankles. Plantar responses were flexor bilaterally. EMG was performed to evaluate for peripheral neuropathy versus lumbosacral radiculopathy"

The exam seemed to have normal results besides the following: "This is an essentially normal study. There were scattered fasciculation potentials in the left tibialis anterior without denervation. This is of doubtful clinical significance in an otherwise normal study."

I am worried about the combination of the new muscle twitches, reflexes, and new weakness in my arms being caused by some form of MND that has developed since my last EMG in 2021.

My PCP has ordered a lot of bloodwork in the meantime to see if they can find anything systemic like you mentioned but the twitching, reflex, and weakness has me very worried.

 

[Clearwater AL]

Tree, at just 29 years old the absence of reflexes (Hyporeflexia) can
becaused by many other conditions besides ALS.

As a PALS, I now have Hyporeflexia. It started three or four years
ago when I could no longer walk or stand on my heals or toes, a part
of true ALS. Unlike those with MS (Multiple Sclerosis).

Your neuro said "This is an essentially normal study.” just two years
ago. It would be extremely rare that any MND has since presented
itself. Then, your concern of a few notes in the report... “This is of
doubtful clinical significance in an otherwise normal study."

You are worried about the combination of the new muscle twitches,
reflexes, and new weakness in your arms being caused by some form
of MND… that has developed since your last EMG in 2021.

Health Anxiety just might be the cause. Being just 29… I hope your
doctors get you onto the path of a life going forward without health
worries. Thirties and forties can be the most productive, creative,
wealth building years in ones’ life. Again, hope your doctors get
you ready.

 

[Tree123]

I just came back from my EMG. The neurologist tested the limbs on the right side of my body. He said everything looked good. My question is if something was wrong with the left side but they only tested the right, would it still appear on the EMG? He said my reflexes and strength was normal but I am wondering if I should have had both sides tested.

 

[lgelb]

In ALS, even muscles that you think are fine will show certain abnormalities on EMG. So it was not "wrong" to test the R side. Sometimes the "fine" side is tested deliberately because there are possible non-ALS factors on the "bad" side that could skew the results.

Since your reflexes and strength were also normal, there is zero reason to think of ALS. You spoke of "weakness" as if it were a fact, but it appears that clinically it is not. And as you will have read (and could remind yourself with the stickies here), twitching in itself means nothing.

You are good to go. If any of your issues interfere with daily activities, that would be the time to ask for another exam to look for changes, or perhaps a PT referral.