Hi Group: Worried about my EMG, about my symptoms and my future

[chocolate32]

Hello everyone,

First and foremost, I want to express how honored I am to be able to reach out to all of you, and I genuinely appreciate the effort you put into raising awareness about a disease that few know exists, and one that is both unjust and challenging. My endless love goes out to all of you and the lives of those who face this disease day in and day out, both those who are still with us and those who have passed.

Currently, I am experiencing a health condition that began around October-November 2023, which still does not have a definitive conclusion. I would like your guidance, given some cardinal symptoms I have experienced, to determine if it is compatible with ALS or not. Unfortunately (or not), this situation has placed me in a position of seeking a lot of information, which I consider positive as it allows me to be in touch with a reality I was unaware of. However, it has also increased my anxiety and my awareness of how little is known about the condition, the conflicting information even among medical papers, and how difficult it is to truly understand how to detect this disease.

Long story (short?): my symptoms began in October 2023. I am currently 30 years old, male. At that time, I was engaged in intense physical activity, including gym workouts, soccer, and running, especially. I had some odd episodes before October, which I didn't pay much attention to. One was when both of my legs fell asleep during a soccer game, which I attributed to wearing tight cleats. The other was experiencing aura and vision problems on two occasions.

Regarding my case: in October, I started feeling cramps after workouts, something I had never experienced before. These cramps began mainly in my left triceps, pectoral area, biceps, and also in the same areas on the right side. I couldn't wring out a cloth without feeling pre-cramps or pain (I know it's a disease of failure, not sensation). I began medical tests, initially my CPK levels were high (1944), but it was attributed to an intramuscular injection I received a few hours earlier before taking the blood exam. I repeated the CPK test and it was normal. Then, I underwent rheumatological studies (C-reactive protein, lupus test, arthritis, erythrocyte sedimentation rate, repeated CPK, Antineutrophil cytoplasmic antibodies, anti-GAD antibodies, and anti-potassium channel antibodies). Everything came back normal, CPK levels normalized to 87, and then I underwent brain and spinal cord MRI scans on two occasions, with and without contrast. Both studies came back normal, except for some disc pathologies with foraminal compromise in the cervical and lumbar regions, but they were mild and according to the doctors, shouldn't be causing symptoms.

Following this, I had my first EMG, and here begins my first doubt: it showed everything was okay, without problems, just a slightly prolonged duration of MUAPs (individual motor unit action potentials) in the biceps muscle (14.7 ms). The rest of the study was fine and only this was highlighted in red, although the final report deemed it correct. Twenty days later (on 27/12), I repeated the EMG at another more renowned institution and everything was fine, but they did not analyze the biceps area. A month later, without yet having a diagnosis, I started experiencing tremors in my left hand, the same hand with the prolonged MUAPs. And a few days later, in February, I began feeling fasciculations. I had felt some in December, but they intensified in February: in legs, buttocks, shoulders, arms, etc. Additionally, I started experiencing strong tremors on the cheek and lips on the right side when smiling. My ability to exercise drastically decreased as I immediately feel pre-cramps, so I haven't been engaging in physical activity since November, only occasional walks, and I feel some pain and walk a bit strangely. Also, I started feeling some discomfort in my ear as if it's blocked and increased teeth grinding.

My concern mainly arises from the more frequent appearance of fasciculations, the duration of MUAPs in the biceps, and symptoms such as cramps, spasms, and tremors or fasciculations in unusual places like my earlobe, face, buttock, under the neck, and other areas. I've read conflicting information about fasciculations being either a good sign or a bad sign, especially in certain areas like under the neck. Therefore, I'm unsure which information to trust. I also feel my left arm is a bit weaker and it gets tired typing all these words, it feels a bit clumsy and weaker than usual, being my dominant hand.

I would like to hear your comments, if any of this seems linked to ALS, having already ruled out, for now, multiple sclerosis and all sorts of rheumatological issues.

Thank you again to everyone. You have my support; I know it's not much, but if anyone wishes to visit Argentina or share a chat with me, I am available anytime to do so (as I am not sleeping well, so I'm awake most of the time, haha).

 

[chocolate32]

I attach the first and second EMG here! Sorry

 

[lgelb]

The one wonky number is for a sensory nerve that a lot of people press against tables, counters, and such. It has zip to do with ALS or any muscle problem.

Teeth grinding/full ear suggests seeing a dentist for a bite guard at night.

Aura/blurry vision sounds like an ocular migraine, and worth reporting to your PCP for your records if you haven't.

If anything, the reminder of your issues are possibly systemic at first glance so I'd make sure you are hooked in with a good PCP who will monitor your labs and physical status. You might have a postviral issue, and rather than abandon exercise, it could be a time to undertake a modified regimen. Our bodies work better when they have things to do, adjusted to your capabilities and needs.

And there may not be a diagnosis or root cause other than benign cramps, lack of sleep, anxiety, stress at work, I have no idea. But it's a worthwhile exploration that you can undertake in its own right when you aren't focusing on neuromuscular disease. What did the neurologist say about all this?

I don't get why you're worried about ALS at all. There's no indication of it in anything you've said.

 

[Clearwater AL]

Once again, and again, you being only 30 years old your chances of being
diagnosed with ALS are extremely low. The odds overall could be six or
even seven digits against you being diagnosed with ALS.

To help... post the Summary/Conclusion at the bottom of your last EMG.

I hope your issues are resolved soon so you can go on with a healthy
happy life for another 30 years, 30 after that without worry of ALS.

Thirties can be the greatest years to live and be productive, secure your
future, have fun, enjoy relationships and meet people you will know for
years to come. Again, i hope your health concerns are resolved soon.

 

[chocolate32]

Hi Lgelb & Clearwater AL

First, I wanted to thank you for your comments. I get really emotional when I see people like you who selflessly help others understand more about this disease, people who you don't know and probably will never meet in your lives. Thank you.

Regarding my health condition, I believe I may have provided some extra details that aren't necessarily related to the suspected ALS condition, particularly those pointed out by Lgelb regarding bruxism, vision with aura, and everything that happened with numb legs while playing soccer almost a year ago.

What I do think is important to consider is the systematic appearance of cramps whether or not I was excercising. These started after exercising and in places where I had never had cramps before, but then they continued to occur even with minimal efforts like lifting a curtain, wringing a cloth, or simply lying down. To that was added later the sensation of heaviness in limbs, feeling as if the circulation in arms and legs was being cut off even while sleeping or lying on the mattress. In fact, several times I woke up with numb arms or legs. I also lost about 6 kg in 3 months and notice that the veins in my legs and arms look more prominent and darker (I'm not sure if it's related, sorry for my ignorance in this case).

In addition to this, although the EMG tests were normal, they were performed due to suspicion of possible myopathy following the high CPK result and the initial pains and cramps. What concerns me about that, given so much contradictory medical literature, is that the fasciculations appeared a month and a half later, and the tremors in the hand specifically around the same time after the EMG. That is, when I went to have both EMG tests, I didn't have those symptoms, only pain and cramps. Now the tremors and fasciculations are scattered and even in papers I've read, the areas where I have them (under the neck, suprahyoid muscles, for example) are not the main tendency to become or be BFS, although they are widespread throughout the body. I've also had hypersalivation or chewing problems, which could be due to anxiety, and a sensation of suffocation while sleeping or "making weird noises" along with discomfort in the legs; What worries me about all the symptoms that appeared later is that they are not symptoms that I have actively sought out, meaning, I'm new to "looking into" ALS, as I thought mine was either benign or associated with MS.

I understand what you're saying about the symptoms not pointing to ALS, but given the progression, and the fact that I feel symptoms such as a strip of my leg between my knee and ankle is "asleep" on the left side, the same side where I had prolonged MUAPs in the EMG for the biceps area, weakness in my arms (it's hard for me to exert force, especially on the left side), stiffness, and what I mentioned above, perhaps all that could be indicative of ALS or a neurological disease with rare occurrence, especially considering my age. The new neurologist who attended me sent me to repeat the EMG precisely because the fasciculations appeared later. I understand that anxiety is present, especially because it increases between one medical appointment and another, but it seems to me already many sustained months of symptoms for that to be the only possible explanation.

Regarding the results of the previous EMG tests, I didn't include them because they are in Spanish but they say +- the following:

1. Electroneurography with surface electrodes. Neurography of the ulnar, bilateral common peroneal, and bilateral sural demonstrate respective sensitive and/or motor parameters (LMD, PEM, PES, VCM, VCS) within normal limits. Peroneal F response with latencies within normal limits and symmetric with adequate persistence of the response.
2. Electromyography with concentric needle electrode. The biceps, triceps, flexor carpi ulnaris, quadriceps, anterior tibial, and bilateral pedial muscles were explored, showing absence of acute denervation activity. Normal amplitude and duration MUPs, without increased polyphasic index or recruitment pattern, traced during sub-maximal voluntary activation. Conclusion: No signs of myopathy are evident according to electromyographic criteria.

These conclusions from the report were given even though the duration of the biceps MUAPs was 14.7 ms. Then, regarding the wonky number in the CNS, I understand that the decrease in the velocity of the fifth finger of the right hand may be due to a fracture I had in that finger two years ago and in which I was temporarily fitted with two small nails to hold the bone in place, which were later removed. Idk if it's possible or not but I assume so.

That would be all regarding my condition. I was only able to respond now because I live in Argentina and I cannot make international payments with my card to register and comment quickly, but I will make a donation soon because your contribution is invaluable.

Again, a very big thank you.

 

[Clearwater AL]

Chocolate, one thing that hasn't helped you even with EMGs clearing you
of ALS. You been on this forum almost every day reading old threads even
one going back to Oct 2011 !

I'm sure in any following replies you will be assured you need not to
continue worrying about ALS.

Again. You are only 30 years old as I dedicated a paragraph above.
Do you want ALS? We've had them before because they mistakenly
wanted the benefits. Benefits? Really? Believe me... there is nothing
beneficial about this. Hope that's not your motive.

I hope the health issues you have are resolved soon and again for
30 more and 30 more years of a healthy life.

 

[lgelb]

So given two normal EMGs, what did the neurologist say then? I doubt there was real concern for ALS.

Velocity in the NCS has nothing to do with ALS. It is very common to have some prolonged impulses. A couple is just no big deal and again nothing to do with a motor neuron disease.

Benign cramp syndromes, on the other hand, are common, and your mind can easily come up with more to grind on. Things like hypersalivation, if they are clinically significant, are readily appreciated by a neurologist, but not, evidently, either of yours. The issues you describe don't match up with your EMGs, and so you can't ask us to re-litigate the possibility of ALS based on these.

You seem disposed to argue all this based on your reading. P/CALS here have lived with what you are reading and imagining. Let it go. You don't have ALS. If you can't move on from your fears, I feel certain you can find a friend, family member, or counselor to talk with.

Meanwhile, there is much to do to feel better, but moving on from your inaccurate self-diagnosis is necessary before that process will bear fruit. Everyone has food, sleep, stress, exercise triggers that it is good to get to know.

I'm closing this thread to help you take the many actions suggested above. Print out this thread, and it can help you develop a "to do" list, which should include blocking the search term "ALS" and sites like this.

All the best.