I apologize for asking here. But, I am in need of advice and experience to articulate my next appointment.

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HopefulMoogle

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Started after the vaccine, September 3rd 2021-- vaccine taken on the 1st. My wife noticed fasciculations in my legs-- specifically lower than the calf( the Achilles areas). Fast forward a few months and my doctor sends me to have a ncs/emg-- this showed up normal, minus the fasciculations. I didn't have a neuro at the time, but this neuro (who did the emg/ncs) said he would take me on as a new patient. So, fast forward to his clinical exam-- all good. No hoffman, no babinski. No UMN at all.
So, I'm thinking great news. However, I see another doctor for something unrelated. He asks about the fasciculations and I tell him the story. He says that they may have done the EMG too early. I'm like.... oh no. So, I call up the neruo and have a second appointment to explain what this doctor has said-- he explains that this doctor really doesn't know what he is talking about. Good; I can live with that even if it's just to placate myself. Nevertheless, some weeks go on and I notice that when I bend my legs, they start to quiver at the knee-- seems to be primarily the left one. Hmmm. Then I noticed it in my shoulder when I put weight on it to get out of bed. Call the neuro back, setup an appointment. At the appointment, ask him about another emg, but of all four limbs-- he agrees, but tells me that he doesn't believe that this is ALS. Flat out tells me not to worry about it. So, I'm like, 'great,' nothing to worry about.

Fast forward to the day of the second emg, this was a few days ago-- carpal tunnel in both hands, he described it as very mild. Doesn't do a full workup on the legs, but hits some spots-- doesn't see fasciculations in legs or arms-- however, the fasciculations are visible to the eye via the legs (he just didn't do the emg on those specific spots per the legs in the second emg). He said he saw the fasciculations visually. I should note, these aren't like twitches. It's like popcorn in my achilies areas.
Diagnosis then and now? Believes it could have been the vaccine. My symptoms started two days after the vaccine. He says he thinks it is BFS/BFCS. Could be auto immune or metabolic. But, the diagnosis is bfs/bfcs. He still doesn't think ALS. However, things keep changing and so on:
  1. Fatigue in the whole damn body. I just feel tired all the time. I can workout, but it feels like I am working against myself. I feel weak and weaker with each day. Feel like I need naps. I started to think I had chronic fatigue syndrome, but I just decided to push through it as to see if I could, seems like I can. But, my recovery is slow. For example, I'm still sore from the emg. At the first one, it was painful and I had recovery-- but it was like 3 days.
  2. I had a really bad mosquito bite that swelled, got a fever, and so on. Asked him about west nile-- just said that would be interesting, but didn't follow-up
  3. I perceive weakness, muscle weakness.
  4. Had a swallowing issue that got better. I have GERD/hiatal hernia.
  5. Had a breathing issue that got better. I have GERD/hiatal hernia and sometimes acid can splash into the lungs.
  6. Sometimes I feel like my balance is off, but I don't have anything to prove that. It's just a feeling.
  7. Hands tingle consistent with carpal tunnel, but that hasn't been there except for the past few weeks. I told the doctor I thought that it has something to do with sleep or positing-- I'm wearing braces to try and help with it. Moreover, I told him that sometimes I will wake up with my pinky being dead-- clinical weakness, but will come back by shaking it out. However, since I started wearing night braces-- this hasn't happened.
  8. Twitching is body wide. But the ones in the body come and go; however, the go is variable. Had one in the lip that lasted a week or so; it's seemingly gone now. However, the legs below the calves? Seems positional, but they never seem to stop, stop. If They are straight or standing? Seems reduced. But, if I put them at an angle while on the bed or couch-- it's instant and constant.
  9. Blood pressure good.
  10. o2 good.
  11. Blood work good.
  12. The leg quiver happens when I get into a squat or when I put pressure on the legs in a way that would be like going down stairs.
  13. I was having jerks in the middle of the night-- that comes and goes in terms of intensity.
  14. I was having vibrations-- gone it seems.
  15. Muscle pains. I have it. They ache.
  16. Joint pain? Kinda.
  17. Muscle burning-- that's mostly gone now, however.
  18. Muscular build. Good weight management. Athlete/athletic.
  19. 2 EMG/NCS thus far;
  20. First one, was a full of both legs: fasciculations only.
  21. Second was for the upper body. However, he did a quick check of EMG only of the lower- didn't see any changes in the spots he checked. However, he did see them visually.
  22. Study of upper, full study. Saw no fasciculations. Clean, besides mild carpal tunnel in both wrists.
  23. Neuro noted a slight tremor in the hands, but it was so slight he hesitated to call it a tremor. I'm really not sure if this was called a tremor or not.
  24. I tried to do shoulder shrugs the other night, and it was like my back muscles were spasming on the contraction.
  25. I asked about both the back and the knee-- was told by the neruo he thought muscle fatigue on the knee and possibly spasms on the back. I asked the Chiropractor about the back, he said that what he felt, he wouldn't call it spasicity. I have no idea what to think about any of it, to be frank.
  26. Shoulder/neck pain. The pain is in a location that is consistent with outlet syndrome, just to make it simplified. I haven't had a chance to ask anyone about this, other than the Chiro.
  27. Wanted to check anxiety off the list-- started taking buspar 10mg yesterday. Honestly, I feel like it makes the twitching worse.
  28. Lower appetite, but I really don't consider this due to the stress and axiety of the situation.
  29. Had a MRI on my back and neck. c5 c6, I think had some mild stenosis. Lower back, I want to say l5 and l6 had spondlyosis and stenosis. However, I asked a neruo surgeon about it-- said they wouldn't cause my symptoms.
Concerns:
  1. Obviously als. However, I have nothing clinical to point to it beyond some general things like fasciculations.
    1. However, what concerns me about ALS is that it's so insidious. I legitimately cannot tell what I should or should not be concerned about. I've read some of the stories of the individuals on here and they do have me concerned. However, I honestly cannot tell what is my mind making connections vs actual connections and similarities.
    2. Is it possible that the carpal tunnel is actually the start of ALS?
    3. The hoffmans test. It was negative insofar as how the neuro did it. But, it's not a hard test to do. If I do it the way he did it, negative. However, if I do it the way I see taught on youtube-- positive. Though, I've read on here and so forth that it's nothing to be worried about.
    4. Tinels test for carpal tunnel: positive. I can produce positive results for carpal tunnel through the physical tests.

TLDR; 35 Male. Athletic. 2 emg/ncv: first one of the lower body, both legs and trunk-- clean. Only fasciculations. Second EMG/NCV is of the upper body with a lower body quick check. The upper showed mild carpal tunnel in my hands. No fasciculations. The lower, quick check, no fasi-- though visibly seen in the achilies areas on both legs.


Special notes: My primary care DO and I think seeing a neuromuscular specialist might be helpful. I have an appointment on the 26th of April, this month-- 2 weeks from now. I just want to know what you all think? If I didn't have the carpal tunnel, I feel like it would have easily pointed away from neurological perhaps. I originally posted this on Reddit and the BFS forum; however, things have changed and so this is the more up-to-date and complete post. I just don't know what to do and I just want to make sure I go into this next appointment with the right questions and information.

side note: I don't have access to the notes from the EMGs or exams. I am simply going off of what the Neuro has indicated to me.


**If you read all of this, I sincerely thank you from the bottom of my heart.**

I sincerely feel terrible about posting on here. I understand the amount of energy and time that responses can take. That isn't lost on me. I hesitated for over 8 months now. I didn't think it even remotely appropriate until now. If my post offends anyone, I am sorry. If I had the ability or power to eliminate this and other disease, I absolutely would.

If this post should not be allowed, don't hesitate to delete it. I don't want to add to anyone's discomfort.
 

Nikki J

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Hi
You have an appointment - great. Nothing you wrote that I saw sounds like ALS Carpal tunnel is very very common and some people with ALS have it but it doesn’t mimic ALS on ncs/ emg. Tinnels is not an als sign. You can’t test yourself for reflexes anyway but Hoffman’s is positive in a percentage of healthy people and the neuro said you didn’t have it. The next doctor can retest

read the getting a diagnosis sticky near the top of this subforum to prepare. Main question is what is wrong with me. Bullet points are good but 29 will make the neuro’s eye glaze over. Focus on current symptoms. Aside from what is wrong you can have a couple of highly focused questions prepared. Most neuros appreciate an organized printed list Of symptoms and questions as long as it isn’t too long
 

HopefulMoogle

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In terms of the Tinnels, I just meant that I can produce the physical test for Carpal Tunnel. My thinking was that maybe if it's simply Carpal Tunnel, a typical physical test might reinforce that. Maybe that's my ignorance.

Okay, so carpal tunnel emg/ncs is very different on a presentation? That's good know, if I am understanding you correctly. I was reading on how I should treat the carpal tunnel, relative to my symptoms, and I came across a gentleman's post about his original diagnosis being CTS with a clean EMG/NCS-- that made me worry, if I'm being frank.

I will go ahead and read that post and take your suggestion to heart. Thank you for taking the time and so forth to respond to my post.
 

wishmobbing

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To be honest I didn't read through your whole post. I stopped after you mentioned some symptoms getting better. ALS does not get better.

I know waiting around for that appointment is hard when you don't feel good. Again, try to be patient. Try not to be too much online.

You mentioned that you wanted to exclude anxiety from the list and are taking medication for it. Starting one day prior. Give it some time.
If you want to check off anything from the list, rather check off ALS. If given the choice I'd chose anxiety over ALS anytime. It is treatable.
 

HopefulMoogle

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Wanted to post an update:

I am literally cramping so harshly that I almost had to go to the ER last night. I think I got 3hrs of sleep last night. I'm in so much pain, I don't know what to do about it.


Does this change anyone's mind on this? I'm going to call my neuro here when they open and ask for a visit/help. I don't know what to do. The twitching and so on is one thing, but this pain is just too much for me to mentally and physically handle.

Pain is in the legs, particularly the quads and hamstrings. It's also in my abdominal, particularly my right abdominal. Honestly, I might just go to the emergency room.

Sigh.
 

Nikki J

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If you go to the ED for cramping they will probably run some blood tests and possibly prescribe a muscle relaxer. In your place I would call my pcp who could do the same thing but it is up to you.
 

HopefulMoogle

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Nikki, do you think that this points towards ALS? I don't know what to think anymore. I was worried about it before, but it was mostly out of my mind. But, this cramping is just too intense. I don't know what is going on anymore.
 

Nikki J

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do I? Given everything you wrote plus recent normal neuro exam and emg ,no. Cramping is non specific. But you have another appointment in 2 weeks to address that So what I think is irrelevant. I would be exploring whether there is a treatable cause like an electrolyte imbalance or dehydration and your pcp can do that
 

HopefulMoogle

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Wanted to update this post and also ask you about something you had mentioned previously.
I met with the specialist at the als clinic. Effectively, this person told me that they generally agreed with the cfs diagnosis, but that she wouldn't rule out als until a year had passed. Said that the chances were slim and that it was a less than 5% chance. Meanwhile, my other neuro specialist said that I absolutely don't have it and so forth. It just didn't make any sense to me. My PCP said that they felt like the one neuro was simply covering their ass and that with the amount of time that had passed, it should really be ruled out completely.


I don't want to focus on that aspect as much as I'd like to ask you about the carpal tunnel situation. Is that something I should be concerned about? It seems like that has been an issue on this forum and other places that I have looked-- where it is stated as carpal tunnel via the emg/ncs, but it was actually ALS. There is a member named LeprechaunSean, I believe, whose example stands out the most to me. Should I be concerned about the original carpal tunnel dx? I don't have atrophy insofar as I know and my emg was normal, insofar as I know-- but something does stand out to me about what the neuro said when he did the EMG at the time he DX'ed CTS and was in the middle of the study-- 'I still don't think this is ALS.'
It's confusing, I'm sure. However, it's incredibly confusing for me as well. I'm about 10 months into this, at this point.
 

Nikki J

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Sean ( rip) never posted any of his emgs that I saw. He may indeed have had cts and then got ALS but his symptoms were utterly different than yours anyway.
you are obsessing about a random remark. It sounds like you have decided he saw something and decided to ignore it because of a preconceived notion. Doctors don’t do that.

agree that the wait a year doctor is being extremely cautious.
 

HopefulMoogle

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"you are obsessing about a random remark." Point taken. Wasn't my intent. Not really an obsessive remark, was meant more to be like a possible memory refresher to someone else's story. Side note, I've been trying to do what you all do here insofar as, since I am currently DX'ed with cfs-- I've been trying to follow the example of you all here by sharing my information with people on the BFS/CFS forums. I really can't articulate how impressed I am with you all.

To the CTS conversation, it simply seems that there is an issue with the CTS Dx'ed and ALS. It seemed like it's an issue with the nature of the emg, missing clinical signs, or subtle differentiation. I just wanted to make sure I understood that correctly. In terms of my edification, it has always been my understanding that the bigger issue for the CTS miss-DX has been a clean NCS with an abnormal emg. Is my understanding complete on the CTS issue?
 

Nikki J

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without knowing people’s clinical results and exams it is hard to comment. I know some of the cts dx were made clincally - before any testing. I believe some people likely had both or cts followed by ALS. The only case I know intimately is that of my sister who was convinced her hand weakness was cts ( denial). She referred herself to the cts specialist who did the testing and told her no cts said it could well be ALS referred her for an mri and told her to see a neurologist. There was no confusion on the electrodiagnostic testing in her case
 

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You truly need to talk to your doctor about the CTS. This forum is for ALS, and regardless of one neurologist covering their behind by saying "it's not ALS, but we will give it a year to be sure to be sure", you truly do not have this disease and you are obsessing by trawling here to find something that will fit your case and prove everyone wrong.

We have done all we can, back to your doctor and get this CTS sorted. Please don't continue posting here, it is not good for you to remain here at all. I wish you the very best.
 

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CTS is diagnosed through a nerve conduction study. ALS is diagnosed through an EMG. They usually do both tests back-to-back. Typing is one of the lead causes of CTS. I had ALS (confirmed) for six years before I developed CTS in one wrist. I didn't even know I had it. I got tested as part of a study on progression/teaching and the nerve conduction study revealed it.

I'm a retired college professor. I can't tell you how many faculty and students came on campus with their wrists in a brace from CTS. It's pretty common.

Don't be afraid to bring up your concerns to your doctors. You're paying them to help you.
 

HopefulMoogle

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Thank you for the response. Yeah, unfortunately I have developed pain down my leg, cramping and stiffness, and random spasms. They went ahead and did another mri of my lower spine-- have a bulging disc and it was possibly torn at some point. Moreover, they put me on 300mg x3day gabapentin. If I don't take it, it feels like I'm really jittery and like a muscle pain starts to creep in. This started more or less 2 weeks ago.

I have no idea what's going on anymore. In short, I reach out here insofar as I'm looking for ways to articulate what I'm experiencing and for others experiences to articulate my questions for the specialists. I have another meeting with my neuro soon. I suspect it will be another emg, but we will see.
 
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