HopefulMoogle
New member
- Joined
- Apr 1, 2022
- Messages
- 8
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
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:
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.
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:
- 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.
- 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
- I perceive weakness, muscle weakness.
- Had a swallowing issue that got better. I have GERD/hiatal hernia.
- Had a breathing issue that got better. I have GERD/hiatal hernia and sometimes acid can splash into the lungs.
- Sometimes I feel like my balance is off, but I don't have anything to prove that. It's just a feeling.
- 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.
- 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.
- Blood pressure good.
- o2 good.
- Blood work good.
- 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.
- I was having jerks in the middle of the night-- that comes and goes in terms of intensity.
- I was having vibrations-- gone it seems.
- Muscle pains. I have it. They ache.
- Joint pain? Kinda.
- Muscle burning-- that's mostly gone now, however.
- Muscular build. Good weight management. Athlete/athletic.
- 2 EMG/NCS thus far;
- First one, was a full of both legs: fasciculations only.
- 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.
- Study of upper, full study. Saw no fasciculations. Clean, besides mild carpal tunnel in both wrists.
- 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.
- I tried to do shoulder shrugs the other night, and it was like my back muscles were spasming on the contraction.
- 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.
- 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.
- Wanted to check anxiety off the list-- started taking buspar 10mg yesterday. Honestly, I feel like it makes the twitching worse.
- Lower appetite, but I really don't consider this due to the stress and axiety of the situation.
- 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.
- Obviously als. However, I have nothing clinical to point to it beyond some general things like fasciculations.
- 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.
- Is it possible that the carpal tunnel is actually the start of ALS?
- 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.
- 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.