A few questions/feedback

[reboot2024]

Hi there,

I will spare all the details but will give a little bit of background for maybe some help? Concerning symptoms started ~9 months ago. Met with PCP, forwarded to neurologist, completed comprehensive neuro exam with no concerns. Ordered EMG just to be sure. Completed 4/2024 clean, upper and lower on right side only. Symptoms persisted and requested additional EMG. Completed 8/2024 upper and lower left side clean with additional neuro exam.

With the knowledge of two clean EMGs in the last 6 months with the most recent being completed in early August...it now feels like my right and left leg is...numb? That's the best way to describe it. Functionality is still all there, not limping or anything and still able to run 6+ miles. No drop foot or tripping issues. Additionally, it does feel like I'm having issues swallowing as well. I am aware of globus and that's probably what it is, but it leads to my two questions.

My two main questions are:
1. How long is an EMG "good" for? If noticeable symptoms (mainly spasms) started 9 months ago, an EMG would pick up the denervation/renervation after that long I would think...but not 100% sure and I forgot to ask my neurologist (who has been great).

2. If there was upper MND, would an EMG pick it up in my lower extremities?

Thank you for any and all feedback/information.

 

[lgelb]

It's not about a sell-by date, as few tests have. It's about reasonable conclusions that can be drawn from all the data, including medical history and exams.

The hallmark of an ALS EMG is specific abnormalities even in areas that seem fine, as well as those that you do not think are.

So two clean EMGs four months apart, prompted by spasms but not functional impairment, that began months earlier, followed by a subjective swallowing issue, makes it hard for me to worry about ALS.

Bilateral numbness is not a feature of ALS onset. I would look closely at all your seating and sleeping surfaces to make sure they are providing enough support, and at your posture in all activities.

I think by "upper MND" you mean arms. The answer is, if there's no signal for ALS in your symptomatic legs, there's not going to be any in asymptomatic arms as described above. If motor neurons are damaged enough to be causing progressive issues, an EMG is not going to pronounce them all good. Likewise, if the NCS is normal for both motor and sensory nerves, I would be looking for non-neurologic causes.

Not knowing what labs you've had when, I would make sure your PCP is up to speed on everything and ask if they think a rheum, ortho, or endo referral might make sense.

 

[reboot2024]

Firstly, thank you for this response. My primary concern was if I got the EMG done too soon and then on the wrong side. Additionally, with the swallowing issues (no dysphagia, just seems hard to swallow/a little bit of pain) I was also concerned that bulbar ALS could be an option (not upper MND as I incorrectly stated above as both sides were tested, upper and lower limbs in which both came back clean).

Labs were all fine. PCP basically told me to monitor electrolytes, which I have been, which hasn't really improved spasms. Took 400 mg of Magnesium a night for about a month with no noted changes with also a calcium/vitamin D supplement for the same time frame. I also would argue that it hasn't been progressive so to speak, just different. For example, I'll be super shaky for 2-3 days, then have horrible fasciculations another day, etc. This weird numbness/stiffness is new.

If you find it highly unlikely that ALS is the culprit, then I will go with that. I know this forum is not a place to diagnose, only for information. My neurologist also found it HIGHLY unlikely that ALS is the cause, going so far as to flat out say "M, you don't have ALS." Which is so rare for a doctor to do.

Once again, thank you for the info and the insight. I appreciate you very much.

 

[reboot2024]

I guess to be fair to myself, I'll give a brief but complete picture. This will probably be my last post outside of an update for my sake and to give others the space they need here as this place has been so incredibly informative.

I'm in my upper 30s. Father of 2 beautiful kids and husband to a wonderful, supportive, beautiful wife of 17 years.

Spasms (more like ripples?) started in both calves 1/2024
Spasms/twitches moved up legs and into thighs, arms, hands, and feet throughout 1/2024 to 3/2024
Met with PCP 2/2024, forwarded me to neuro.
Complete and thorough neuro exam done, no concerns noted but EMG ordered just to rule out anything neuro couldn't see.
First EMG done 4/2024 on right side only. Came back clean along with NCS came back normal "nerves of a 20 year old" the doc said.
Fasics continue all throughout body. Popcorn in shoulders, sides, neck and occasional twitch in my face and lips.
Occasional tongue twitch every month or so from 4/2024 to now (more on that below).
Second EMG done 8/2024 on left upper and lower and right lower. Came back clean, NCS also normal.
Currently have spasms/twitches/fasics all throughout, including a twitching left pointer finger and on the pads of my thumbs
Left eye twitch finally has gone way down after constant twitching for 2 straight months
Newest development has been a fairly consistent tongue twitch on the right side of my tongue, which is very unsettling.
Neuro recommended a tongue EMG/facial muscles just to be sure. Scheduled for late November.

As stated above, no noticeable loss in function outside of my subjective swallowing issue or atrophy. No slurred speech or difficulty chewing. No noticeable fatigue. No balance issues. Maybe slight hoarseness in voice for the last couple weeks? Wife has told me no change in tone of voice.

My last questions I have are these:

• Would I be the first documented case ever to have twitching/spasms start in my calves, have them throughout my body to then develop bulbar ALS?
  • Stupidly worded question...but it's the best way I could put it.
• Would I be seeing some kind of decreased function somewhere after 9 months of the beginning of me noticing these symptoms?
• Any suggestions outside of increase electrolytes, since I've tried that, to decrease the spasms?
• And last stupid question, I read about Lou Gehrig the other day and didn't realize he continued to play baseball at the professional level, even as his performance declined and presumably his disease progressed. The reason I point this out is because I still work out a decent amount and as noted above, run about 15-20 miles a week. Would a person still be able to do that if ALS was active in their body?
  • I know everyone is different and it affects everyone differently, but genuinely curious as to this.

Thank you if you read my book and are willing to answer my questions. As I stated, this will most likely be my last post unless someone would like me to post an update of my tongue/face EMG.

Thank you for this community,
M

 

[lgelb]

Possibly. Can't think of any other such cases, esp. w/ 2 clean EMGs.
Given diffuse twitching, hard to imagine not seeing any functional equivalent.
A drop or 2 of Mg lotion on hot spots. Therapeutic massage. More sleep. A wearable to see how the quality is. A sleep study if the data look outside of benchmarks for your age. You see you've monitored electrolytes but sometimes our needs shift as we age, even in your late 30s. I would really look at the balance of hydration and electrolytes in your diet. If you wash them out, they can't help you.
Not for long. Again, hard to think of anyone who maintains that fitness level for nearly a year.
Feel free to post the bulbar EMG when you get it.