EMG concerns, multifocal onset?

[Darchello90]

Intro:
Hello everyone. I'm 32 years old male. Thank you for making me the opportunity to ask you for the opinion on my current situation. Please be frank with me as my anxiety is under control and I gained so much knowledge about the disease, procedures... I just need your opinion on what would you do next in this situation. I'll try to write this as shortest as possible.

History:
My symptoms started 4.5 months ago, 2 weeks after getting HPV vaccine (could be unrelated). All of a sudden started feeling my tongue is heavy and that chewing, talking and swallowing is harder. In the same time period my legs were shaking when going downstairs and arms were tremoring and shaking when even slightly engaged. Myoclonic jerks as well. 2 weeks after that I started experiencing bodywide fasciculations. Waking up in the middle of the night with dead both hands. Went to the Neuro for the first time and she performed clinical test - said all ok. 2 months after that tongue became scalloped (it wasn't like that before). So I ordered first EMNG.

1. First EMNG was 2 months after the first symptom. It was performed on all limbs and briefly on tongue - said only right tibialis muscle chronic radiculopathy (L5 right) and to forget about ALS. So I did for some time, maybe a month, but noticed getting weaker and weaker. Doing some brisk exercises caused me to recover much more time. The tongue became obviously smaller (my personal observation), and started feeling electricity feeling all over the tongue with the taste changes (bitter, lemony). The taste issue come and go. Though no weakness in tongue still. Then at the same time soft palate started falling down which now makes sound like nearly snoring even awake and constant need to swallow something even there is nothing. I just feel like there is something different there but the muscles work well (can raise it properly) and can still swallow. Around that time started experiencing diaphragm (or some very close muscle) twitch which causes a heartbeat every time it happens and it happens pretty frequently. At this point I ordered another EMNG in a better private clinic.
2. Second EMNG was 1.5 months after the first one (so 3.5 months after the first symptom) and it found:
   Left quad, Left Abd poll, left Abd dig, EDC, FCU, Deltoideus - Normal,
   NCS - mildly low sensory speeds on wrists,
   They didnt test right leg,
   All tested muscles polyphasic units +1 and insertional activity +1,
   Left tibialis and left calf chronic radiculopathy,
   Left foot:
   • +1PSW, +1Fib, +1FP, 2mV Amp, 8 ms Duration on left foot (abd hall muscle),
   • +1Fib, +1FP , 3mV Amp, 8ms on EDB muscle,
   Conclusion was mild radiculopathy on L5 and S1 left with active denervation on left foot. Neuro said it's normal and doesn't point to ALS.
3. So I was concerned at this point even though she said all ok and I went to neuromuscular specialist that is the best I could get who saw hundreds of ALS patients in her carrier. And she did the clinical exam and said only brisk reflexes on both knees but that's all ok. So, clean clinical exam. I asked about the dirty EMNG she said for peace of mind to go to the best Neuro for EMNG to repeat it and finish with all this. So I did it and as well as repetitive stimulation study. So the third EMNG was done almost 4 months from the beginning of symptoms:
   • NCS - all ok,
   • Repetitive stimulation test - all ok,
   • Normal insertional activity on all muscles,
   • Normal polyphasic units on all muscles,
   • Left tibialis and left calf no active denervation but +1 Amp, +1 Duration, -1 Interference pattern,
   • Right tibialis and right biceps no active denervation but +1 Amp, +1 Duration, -1 Interference pattern,
   • Foot is not tested this time,
   • Other muscles (both deltoids, both quadriceps, right calf, left biceps, both interosseus, genioglossus, trapezus right) are normal,
   • Conclusion: mild chronic lesion of L5 bilaterally, S1 left and C6 right.
4. I went again with all this to the same NMS specialist to evaluate all my results and issues. She said still it's nothing. Performed clinical exam and said all fine. I probably have BFS or BCFS and gave me Xanax, Pregabalin, Epineuron and some supplements. But she noticed that it was easier for her to move my left toe down against my resistance than the right one. She said that in the report that the left leg is little bit weaker than the right one. Also I was positive to Chvostek sign bilaterally.

Current state:
First thanks for reaching to this point. Well, I don't remember hurting my spine in the period of 2 months (from first EMNG up until the third one) in order to have the issues spreaded. Maybe it is the poor performed first test. The thing is right now after 4.5 months from the beginning I feel like I'm so close to left foot drop. No pain though. I have to manually think about raising it up with some more strength than it used to need in order not to catch the ground. It feels so dead. Bulbar issues are worsening slowly, starting to have ptosis on right eye. Everything just weakens at the same time slowly on my body. Looking at this forum I can mostly relate to a guy named Corwin that was sadly diagnosed after a long process of diagnosis. The worst part in terms of progression is that tightness around calfs started to happen on any muscle exertion and the precramp feelings. Something like if I engage it some more it will become a full cramp. Joints cracking and popping (especially knees) and needs serious warmup in order not to hurt when used. I think there is a slight atrophy on few places but I cannot confirm that. Heavier breathing as well and sometimes waking up grasping for air.

Other tests done:
Electrolyte blood test, B12, CK level (97), Thyroid antibodies panel, ORL exam: all normal
Went to psychiatrist for opinion on psychological perspective, going to psychologist.

The questions part (finally )
1) So now I am cleared by NMS 2 times (7 days ago the latest time), did 3 EMGS and there is no follow up and nothing at this point. So I guess I need to wait for this foot to fail completely or what would you do?
2) Can this be early special onset (multifocal) as it was triggered maybe by the vaccine (not sporadic anymore),
3) Things are going worse each day, no better day no improvements, not much sensory issues. Does this look like ALS?
4) If (3) is negative what do you think this could be.
5) Is there any special waveform in the EMNG which can differentiate between radiculopathy and ALS in early stage?
6) As I still don't have clinical weakness confirmed and have bulbar issues.. how much time I need to survive without clinical in order to be "sure" that it is not ALS in your opinion?
7) I mean there are outliers and that it still can be ALS but it would be specific case I'm asking what is the usual time to consider it is not ALS if you have all these symptoms?
8) Now some deeper question. I researched a little bit about connection between strong immune system reaction, oxidative stress, neurotoxins... and saw much correlation between that and ALS. Initially a month after my symptoms started I had Eosinophils percentage in the blood higher than normal and there is a study which connects EDN (Eosinophil-derived neurotoxin) and MND. Do you have any thoughts about this?
9) Assuming I am early stage of ALS but highly aware of my body, can I use it as an advantage and do some therapy (that cannot hurt if I don't have it) right now in the early phase to stop the progression?

Thank you so much for taking time to read this. I feel that I'm waiting for the failure and there is nothing I can do. And that I did follow the medical practice that I've been told but now left to suffer lol.
Don't need to answer at every question just feel free to answer whatever you find comfortable. Thanks again.

 

[lgelb]

First, forget about Corwin. He was ultimately diagnosed with something else, not ALS.

I don't expect your foot to fail completely, or that you will be diagnosed with ALS, either. I don't see any clinical exam suggesting you have bulbar issues or clinical weakness. There are no documented cases of vaccines causing ALS.

If you had ALS, early intervention wouldn't stop it. But I really don't think you do, so the rest of your questions all fall under that opinion.

My advice is to stop reading, keep living, and if moving your L foot is actually difficult, consider an evaluation by a physio. If you have an eye problem, see an ophthalmologist. And don't be so quick to string all these things together from an MND standpoint, because either/both can relate to anxiety, given the power of your mind.

 

[Clearwater AL]

Darchello, You're only 32 years old, you've had three clean EMGs. On the first you were
told to forget about ALS. And same the following two. Being your post is rather
lengthy, seemingly focused, you suspect everything points to ALS. So many would
cherish to have just two clean EMGs and go on with their doctors, putting the worry
of ALS (a rare disease and much much rarer at 32 years old) behind.

As Igelb suggested... try hard not to stop reading old threads here and Dr. Google.

I hope the path to a normal healthy life is in the near future for you. Thirty two more
years and thirty two more after that.

 

[Darchello90]

Thank you both for taking time to respond to my concerns. Well going to live my life sounds great but I feel so much incapacitated to do that. For example few weeks ago I tried go vacationing in the forest with my girlfriend I had so many precramps and tightness in my legs I couldn't follow her pace. She has to wait for me every few minutes. Constant feel that I'd fall anytime. Felt so weak and incapable that I just couldn't enjoy it. She saw that my mind is somewhere else and I'm trying my best to live the best I can but this way it is just suffering. This will just ruin my life.. I'm gonna loose my gf as well as my job as I'm barely able to go to the office and do everyday activities. And comparing myself month ago I can clearly see getting worse. IDK really I took the psychological part off all this but there is no improvement. Taking proper meds as well.
So you consider my last 2 EMNGs clear and not concerning after first being much better? I know doctor said that but I saw many examples of early onset with bilateral limb issues on emngs very similar that I have. Can you please explain from your point of view why is this considered normal emng? Thanks again.

 

[lgelb]

No one said your 3rd EMG was 100% normal. What we are saying is, it's not concerning for ALS.

To even begin to see a concern for ALS on an EMG requires both active and chronic denervation. Yours evidently did not show any active denervation.

Bilateral onset is unusual in ALS. If you mean EMGs showing ALS show bilateral nerve damage (of a kind yours didn't show), that's true, because the hallmark of an EMG showing ALS is certain abnormal findings even in muscles that are not a problem.

If you cannot walk and go to the office normally, I advise you to go back to your internist and revisit systemic illness, including long COVID, whether you ever tested positive or not.

 

[Darchello90]

Thanks for the reply. But on the second EMG (performed on October 4th) I had active denervation in 2 muscles on left foot and other chronic denervations as stated above. Third EMG was performed by different Neuro so I didn't show her the previous reports and she didn't test my left foot. I am pretty sure it would still show active denervation there as it got worse regarding fasciculations, vibrations and fast ripple twitches. As well as felt more dead. Also fasciculations all over is now much easier to induce (by simple muscle stretching I got crazy and fast twitches).

New questions:

10) Should I do another EMG and when? I'm now resting most of the time behaving as if it is radiculopathy as doctors said (but I'm sure it is not) so that it can "heal" until the next EMG. For now it is only getting more dead each day.​

11) As I said, the active denervation on left foot shown on EMG that is performed on October 4th. If it is ALS what is some average expectation for it to completely fail? I know this is highly individual but I'm trying to get some hope from the time that passed from then to now. Is it supposed to already fail in 1.5 months?​

12) I'm wondering if other muscles close to my left foot (tibialis, calf, quad) should also show active denervation if it is ALS? For now they show chronic denervation as written in the above post. I don't know how it is supposed to spread from left foot.​

13) Let's suppose that I'm right and that my tongue is atrophied bilaterally from sides and soft palate is slightly fell down (only I can notice that - doctors say that it is ok) should chin EMG, that is done 2 months after the issues, show something?​

I forgot to add in the first post:
- I have some vision issues like slower focus and halos around the lights that became bigger and bigger right from the beginning up to now,
- I need some time to open my eyes the first thing in the morning. It's like they are glued to the eyelids.
- Weak and shaky voice. Need more energy to talk.
- Shaky breathing (exhale mostly) sometimes when tired. Heavy feeling around diaphragm after coughing.
- I forgot to add heartbeat skip in the first post (I just wrote heartbeat). So annoying each time after diaphragm twitch.

Please help, I seek for rather straight and honest answers than the reassurance as I know something is going on and kind of accept that but it is still hard for me to not know what exactly and what to do next.

 

[Bestfriends14]

Active denervation is not ALS on its own. Laurie kindly answered all your questions about why your issues do not say ALS, so it is up to you to believe it and move on. If you had this disease, why would the doctors not have told you? Don't you find that strange? Does that not tell you right there that you dont have ALS?

Keep working with your docs.

Take good care.

 

[Darchello90]

Ok, thank you for the response. If this post looks too long for you go to the summary section as I'm going to RANT a little bit. LOL.

What makes me don't believe the doctors... Huh it's a huge list haha but some of the most important reasons:

• My own body telling me that I'm getting worse and performs very poor. The difference I see is so obvious to me but still not to a doctors who don't know how strong I was and how I looked before. But they are still dismissive without explaining why. I understand that and don't judge (they are just people) because nobody looked at my body everyday and nobody receives the input from my body as well as I do.
• My own research which included lots of stories (here and on other places). Stories online where I can clearly see the progression of some people and that is not consistent with the general understanding of the disease. Doctors usually say that people on the internet say this or that which is highly subjective... well some people are very smart intellectuals that clearly shows and explains their issues and it is consistent with the timeline and I see no reason for them to lie about anything. Those stories just tells me how we poorly understand this disease,
• Medical documents stating all kind of things that matches my condition while doctors don't want to discuss them (outdated Medical system and doctors that don't update their knowledge and the fact this disease is rare and very difficult to diagnose and understand),
• My NMS said tremor is not part of the ALS. I saw way too many stories that it can be for some people and it would be so strange coincidence that all of them have that and that it is unrelated to ALS. Also other Neuro told me if I have muscle twitches and no weakness it is all ok because muscle twitches mean nerves are dying. Surely not ok for so many people and there are many documents where nerve hyperexcitability and twitches happening for months without weakness and before nerve death.
• EMNGs that I learned enough how to read and understand basic stuff and it was dirty on multiple occasions gradually. In my head my whole picture is so obvious like the task "continue the array: 1, 3, 5, 7, 9, x". x = ?, that's how my progression looks to me. So it would be a miracle for x not to be 11 but I still hope it is not, and seeking for facts.
• EMNGs are not that sensitive and can be wrong, there are multiple stories that it highly depends on who is performing it and how.
• My own judgment how the clinicals were performed and the dedication from the doctors (writing stuff in the report that didn't checked properly - for example they wrote swallowing normal without checking that, checking Babinski reflex without putting it in the report 2 times... said both times ok but why not adding to the report??? suspicious, right?), just sloppy and poor examination but saw 4 Neuros with good reputation.
• The doctors have the responsibility to stop the anxious people from doing more tests if they suspect anxiety (that's the part of their education) because many people suffer from strong health anxiety and they are trained actually to be dismissive for them to show the patient an authority and confidence in their decisions. Which stops non anxiety people (like me) from being examined properly. Also me being young makes them even more certain in their decision. So they do the examination without caring that much as they strongly believe it's nothing (which is unprofessional from my POV). So I think for profiles of people like me waiting for obvious clinical issue is the only thing where I can get to the point to believe doctors. But then I won't need one as I can see myself that I have a problem lol.
• The recent covid / long covid proved how Neurology is poorly understood. BFS, BCFS, Fibromyalgia, RLS, Somatic disorders are all the diseases where doctors cannot get the answers of what is actually wrong with you. They just match you with the symptom pattern and have no clue why it is happening.
• Lot of neurological diseases as well as ALS are diagnosed by ruling out other stuff. So in early phase to rule out BFS you need to rule out ALS and to rule out ALS you need to rule out BFS.... you got the point.
• The clinical exam for weakness is a complete joke for a disease that is time critical IMO. It should be renamed to a "Failure test" because weakness is so subjective. For example I am weak now from my perspective but I'm probably still much stronger then someone 90 years old or so but we both can pass clinical weakness test. Nevermind, I gone too far sorry.

Again I wrote an essay but didn't want to. I'll add an summary what you probably should read if you have difficulties... I understand you people being dismissive here as well and it's not my intention to push to get the answers as I kind of imagine what you've being going / gone through and appreciate for even being here to read all this. THANK YOU again.

But the truth is I didn't get answers to "all my questions" as Bestfriends said (don't take it as a bad critic please). As I said I already appreciate you so much for being that strong and kind. I'll certainly make a donation at some point to try to help.

At least this forum is very helpful to show the stories of people going through this hell. So let my story be the one of them. I hate when someone doesn't update or just disappear. I probably won't make any updates here as I realize it is bothersome for everyone and that I won't get my answers. So we are all at lost.

BUT if you (reader) have any questions for me try and find me on Reddit (the same username as I have here) and don't hesitate to shoot me a message please. That place is the only sanity for me currently as nobody else around me can even remotely understand what I'm going through. We're all here in the same battlefield and I built a strong sympathy with all of you people. I couldn't imagine in the remotest parts of my brain how difficult this all is until I got here. I'm currently active on Reddit BFS group as my latest NMS told me "probably BFS or BCFS" so I'll be there.

Thank you again for reading and feel free to close this thread.

Summary:

• Don't trust doctors for multiple reasons explained above. Basically complexity and rareness of the disease, my symptoms not being that obvious, dirty emngs without clear explanation, poorly performed some of the tests, outdated Medical system, Neurology being poorly understand IMO, my own research, stories online where I can clearly see the progression of some people and that is not consistent with the general understanding of the disease and what doctors said....,
• Thank you for having opportunity to reach people with the same concerns and who has some knowledge on this topic,
• Being honest with saying that I'm not getting much of an answers here I am seeking for (not being a bad critic but just the circumstances and complexity of my case and my high expectations),
• Being in touch with other people that feels the same / have similar problems / have to talk about anything but using Reddit (being there with the same username as I have here)
• Closing the thread

 

[Nikki J]

We see these arguments here a lot and people generally turn out fine. Best of luck to you