I don’t think I tested for MG but I think it’s more quickly progressive and bilateral.. I have been twitching for 2.5 years and slowly been losing function..
It started with my tongue getting tired when eating years ago, then clearing my throat a lot, and mild paresis of my vocal cord, and now full paralysis of my left vocal cord. My left pinky is also weak and left leg.. I have a tremor in my left facial muscle when I do a half smile.. my uvula is also deviated which I believe indicates cranial nerve weakness..
I agree with the vagus nerve as I also have pre ventricular contractions which is affected by vagus nerve from what I looked up..
I’ve seen 5 neurologists and had 2 EMGs. I will see a neuromuscular next, and am really certain I will get an als diagnosis soon enough..
I think something with Covid triggered it, als can be triggered by virus and even reactivated hold viruses which Covid does unfortunately..
There are many studies on covid and neurodegenerative affects and triggers that it does to the body. I’m glad you recovered but mine has been a slow downhill decline, I can only hope my fiance doesn’t follow my steps as she is only 26 and I am 30, but it doesn’t look good. Even if it isn’t als the progressive paralysis and weakness will eventually be the end of me unless they figure it out.
You are right.Covid did trigger it.I am in bad shape and I feel bad that you are going through the same thing.I have lost strength in the trunk of my body along with diaphram/sternum.Even if I had to throw up I could not.I thunk it is the loss of strength and vagus nerve damage.The neurologists I have talked to have never heard of such a thing.I barely have a gag reflex anymore.At the beginning I felt like a human vegetable.I could not swallow,go to the bathroon,sleep.I did have them test for Epstein Barr and my titters were extremely high.I know that before I was diagnosed with Hashimito's that is all that could find was elevated Epstein Barr titters.My neurologist is sending me to a team of neuromuscular doctors since he can't figure out what is wrong.I am praying for you and your Fiance.It is not fair that we have to go through this.I was only on the steroids for a very short amount of time since my primary was not exactly sure what I had,but It did give me strength.During that time I thought it was the end for me.I am just wondering if Ivig infusions could possibly help us.I will let you know if I hear on any new possible treatments.
You are right.Covid did trigger it.I am in bad shape and I feel bad that you are going through the same thing.I have lost strength in the trunk of my body along with diaphram/sternum.Even if I had to throw up I could not.I thunk it is the loss of strength and vagus nerve damage.The neurologists I have talked to have never heard of such a thing.I barely have a gag reflex anymore.At the beginning I felt like a human vegetable.I could not swallow,go to the bathroon,sleep.I did have them test for Epstein Barr and my titters were extremely high.I know that before I was diagnosed with Hashimito's that is all that could find was elevated Epstein Barr titters.My neurologist is sending me to a team of neuromuscular doctors since he can't figure out what is wrong.I am praying for you and your Fiance.It is not fair that we have to go through this.I was only on the steroids for a very short amount of time since my primary was not exactly sure what I had,but It did give me strength.During that time I thought it was the end for me.I am just wondering if Ivig infusions could possibly help us.I will let you know if I hear on any new possible treatments.
I will let you know as well. I also requested to do IVIG treatments on the off chance it could help, because the alternative isn’t any better so might as well throw the kitchen sink at it and see if anything helps.
There is a covidlonghualers subreddit you should check out if you haven’t. Many people complain it about muscle twitching and weakness after infection.. If enough people or enough “important” people get this then eventually they have to try something.. there is also a benign fasiculations subreddit and even Facebook group and these people have similar issues to us.
Sometimes I wish I never went out that night that triggered everything, life would be completely different. But that’s in the past- we can only look toward what can potentially help us now and just hope.
I will let you know as well. I also requested to do IVIG treatments on the off chance it could help, because the alternative isn’t any better so might as well throw the kitchen sink at it and see if anything helps.
There is a covidlonghualers subreddit you should check out if you haven’t. Many people complain it about muscle twitching and weakness after infection.. If enough people or enough “important” people get this then eventually they have to try something.. there is also a benign fasiculations subreddit and even Facebook group and these people have similar issues to us.
Sometimes I wish I never went out that night that triggered everything, life would be completely different. But that’s in the past- we can only look toward what can potentially help us now and just hope.
You should definitely try IVIG.Since this was brought on by covid it is possible it could help you.I don't think trying steroids would hurt you either for a short amount of time.I really thought I was going to die because I had lost so much weight.Steroids are a miracle drug.Thankyou for letting me know about those sites.I will check them out.I know what you are saying about regretting going out.I only got the Pfizer vaccine and no boosters,but I was so careful for three years.I pretty much worked at my office for three years by myself.Than I decided to take a girls trip to the Beach.Five days later I had a reaction and it was all downhill from there.Covid attacked my whole central nervous system.It was basically like I went into permanent fight or flight.I believe when covid attacks the body it brings on phychosis along with reactivating any kind of autoimmune ot virus in your body.Even my hair is different now.I use to have long straight hair and now it looks like chemo hair.It almost changes the DNA.Crazy!
I was first diagnosed October 2020 with my first bought of Covid. At the time I had not had the shot. After having Covid (bad flu like symptoms for 3-4 days), I had new symptoms after having it. Heart palpitations, muscle twitching, spasms, internal vibrations, etc… I’ve been checked out by every specialist out there. A neurologist thought maybe MS or ALS, but in 4 years I’ve not had any other symptoms for those two diseases. I’ve seen a cardiologist who swears there is nothing wrong with my heart. The sporadic heart beats and high heart rate at times come out of no where. All this to say, no, I have not found a solution or anything to help the fasciculations (twitching). It’s very scary! Some days it makes you think am I going to see tomorrow? I’m glad to know that I am not the only one with the symptoms. Big hugs to everyone out there suffering with Long Covid! ♥️
I was first diagnosed October 2020 with my first bought of Covid. At the time I had not had the shot. After having Covid (bad flu like symptoms for 3-4 days), I had new symptoms after having it. Heart palpitations, muscle twitching, spasms, internal vibrations, etc… I’ve been checked out by every specialist out there. A neurologist thought maybe MS or ALS, but in 4 years I’ve not had any other symptoms for those two diseases. I’ve seen a cardiologist who swears there is nothing wrong with my heart. The sporadic heart beats and high heart rate at times come out of no where. All this to say, no, I have not found a solution or anything to help the fasciculations (twitching). It’s very scary! Some days it makes you think am I going to see tomorrow? I’m glad to know that I am not the only one with the symptoms. Big hugs to everyone out there suffering with Long Covid! ♥️
I just stumbled upon this thread. I also developed sympotms of internal vibrations which I originally blamed on Covid but now I truly believe my tremors are the result of Klonopin, which is a nasty Benzo medication a sleep doc. put me on around the same time. After being on it for a month or so I noticed tremors beginning. Body buzzing during the day as well, felt at times like I was sitting on an outdoor AC unit while it was running. I blamed Covid but then realized it might be this new med. After taking it for 7 months I stopped cold turkey, which is very dangerous. Now more than a year later my buzzing has completely stopped but I still notice inner vibrations at nighttime only. Unfortunately I read the withdrawal of this medication, especiually when not weaned at a slow pace, can linger for several months even years. I saw a neurologist who found nothing wrong with me. I also thought I was developing MS or Parkinsons at one point. Crazy stuff. My primary couldn't believe sleep doc gave me this nasty Benzo. I hope you find peace at some point but I don't think it will harm you although its frightening for sure.
I was first diagnosed October 2020 with my first bought of Covid. At the time I had not had the shot. After having Covid (bad flu like symptoms for 3-4 days), I had new symptoms after having it. Heart palpitations, muscle twitching, spasms, internal vibrations, etc… I’ve been checked out by every specialist out there. A neurologist thought maybe MS or ALS, but in 4 years I’ve not had any other symptoms for those two diseases. I’ve seen a cardiologist who swears there is nothing wrong with my heart. The sporadic heart beats and high heart rate at times come out of no where. All this to say, no, I have not found a solution or anything to help the fasciculations (twitching). It’s very scary! Some days it makes you think am I going to see tomorrow? I’m glad to know that I am not the only one with the symptoms. Big hugs to everyone out there suffering with Long Covid! ♥️
I’m in the Uk with now over 4 years 4 months of Long Covid…don’t get to see specialists , and even ones we get referred to don’t see, if lucky a phone call, or just dismissed after various scans ( chest X-rays, ecgs, echocardiogram, breathing tests)… So being left with high BP, high HR, breathlessness, fatigue and no sense of smell, and only ‘remedy’ being 5 different BP drugs. Even a Falls Consultant with a tilt test table, a 4 hour journey to/from home, who diagnosed postural hypotension ( not POTS) along with hypertension on sitting, just juggled the BP drugs. So last 18 months looking for any DIY improvements: swim 50 mins 5x a week, and intermittent fast 16:8 then ( no statistical improvements for BP or weight but must be doing me good!). More recently looking at research on vitamins/ minerals and likely deficiencies in Long Covid sufferers…bit ambiguous whether people were short before they caught covid, or whether covid and LC has caused them. You’ll find lots on B12, vit D, ferritin/iron, also vit C, thiamin/B1, Magnesium etc etc, plus supplements like Alpha Lipoic Acid, nattokinase, Augmented NAC etc. I’m surprised I don’t clatter when I walk! But these additions have been added slowly, say only one change/ addition a month. This last week I started B1/Benfotiamine said to be of use for high HR/ postural hypotension ( and just found out also for pre existing diabetes)…little work done on it as Big Pharma can’t patent it. Have you considered low B12 for neurological symptoms ( which can be easily / cheaply tested …best as ‘active’ B12)?
Try Stellate Ganglion Block. I had my first on this past May 29 and my recovery as really gotten exponentially better. The tremors has been my main Long-haulers symptom for three years. The first thing that started helping was daily dosing of L-theanine (which I still take). It is is extracted from green & black tea and is the substance in tea that helps relax our nervous system. The next thing that helped some more was Anti-anxiety med from Cleveland Clinic's post COVID recovery neuro and migrain doc. The final thing that has jumped my recovery to where my body felt before the COVID is the Stellate Ganglion Block. The SGB has essentially eliminated my body's reactivity that cycled tremors, even though I still feel the Long Hauler effects in my brain, my body does not react to my brain Long-haulers signals anymore. I'm going to get a second SGB done in August in hopes it can calm my brain too. The final piece is getting good sleep, which the C19 virus was also aimed at disrupting (remember?) as our nervous system need real down time to reset, otherwise we are just left with a hyper-reactive nervous system stuck in a kind of "catastrophic" feedback loop. I hope you can all benefit from these helps that have helped me! God bless, and don't stop fighting!
While I hate that other people are dealing with this, it is nice to find out I'm not the only one. I got Covid in Sept of 2020 and noticed a few muscle spasms in my legs that eventually went away, but then after each (2 in total) Moderna vaccines the muscle spasms got way worse and never went away. I eventually had an EMG and was diagnosed with benign muscle fasciculations. I have them everyday in my legs and sometimes in my back and arms. I take gabapentin which helps but doesn't make them go away. Most days they are just annoying, but some days are really bad with pain and trouble sleeping. I haven't figured out what makes them worse on my bad days.
No idea if my symptoms are due to covid or not. Active and otherwise healthy 57 yo male, all the usual testing normal:
- initial symptom: difficulty speaking, especially when tired.
- at approximately 5 months, weird sensation in left arm (only way to describe it - it felt weak but wasn’t weak)
- 5.5 months, same sensation left face.
- 6 months, both legs, body wide fasciculations and internal buzzing.
- 6 months, pain in left hamstring.
- 6 months random spastic movements mostly when sleeping. Clenching of right hand, extension of right forearm, biting tongue.
- 8 months toe cramping.
- all symptoms get better with 3 days of rest, and get an order of magnitude worse 2-3 days after hard exercise (classic PEM).
- also hard to explain, but it feels like this is moving through my body. The face and left arm are barely noticeable to me now, but legs are hugely noticeable. My mountain bike rides are at about 70% of what I used to do before I hit a wall. It is nothing to do with fitness.
No idea if my symptoms are due to covid or not. Active and otherwise healthy 57 yo male, all the usual testing normal:
- initial symptom: difficulty speaking, especially when tired.
- at approximately 5 months, weird sensation in left arm (only way to describe it - it felt weak but wasn’t weak)
- 5.5 months, same sensation left face.
- 6 months, both legs, body wide fasciculations and internal buzzing.
- 6 months, pain in left hamstring.
- 6 months random spastic movements mostly when sleeping. Clenching of right hand, extension of right forearm, biting tongue.
- 8 months toe cramping.
- all symptoms get better with 3 days of rest, and get an order of magnitude worse 2-3 days after hard exercise (classic PEM).
- also hard to explain, but it feels like this is moving through my body. The face and left arm are barely noticeable to me now, but legs are hugely noticeable. My mountain bike rides are at about 70% of what I used to do before I hit a wall. It is nothing to do with fitness.
Welcome @dt200r, You mentioned your symptoms were classic PEM. I did find some information that might be helpful while you wait for other members to respond.
"The pathognomonic symptom of ME/CFS is post-exertional malaise (PEM) or post-exertional symptom exacerbation."
-- Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
Did your doctors mention PEM or ME/CFS?
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You are right.Covid did trigger it.I am in bad shape and I feel bad that you are going through the same thing.I have lost strength in the trunk of my body along with diaphram/sternum.Even if I had to throw up I could not.I thunk it is the loss of strength and vagus nerve damage.The neurologists I have talked to have never heard of such a thing.I barely have a gag reflex anymore.At the beginning I felt like a human vegetable.I could not swallow,go to the bathroon,sleep.I did have them test for Epstein Barr and my titters were extremely high.I know that before I was diagnosed with Hashimito's that is all that could find was elevated Epstein Barr titters.My neurologist is sending me to a team of neuromuscular doctors since he can't figure out what is wrong.I am praying for you and your Fiance.It is not fair that we have to go through this.I was only on the steroids for a very short amount of time since my primary was not exactly sure what I had,but It did give me strength.During that time I thought it was the end for me.I am just wondering if Ivig infusions could possibly help us.I will let you know if I hear on any new possible treatments.
I will let you know as well. I also requested to do IVIG treatments on the off chance it could help, because the alternative isn’t any better so might as well throw the kitchen sink at it and see if anything helps.
There is a covidlonghualers subreddit you should check out if you haven’t. Many people complain it about muscle twitching and weakness after infection.. If enough people or enough “important” people get this then eventually they have to try something.. there is also a benign fasiculations subreddit and even Facebook group and these people have similar issues to us.
Sometimes I wish I never went out that night that triggered everything, life would be completely different. But that’s in the past- we can only look toward what can potentially help us now and just hope.
-
Like -
Helpful -
Hug
1 ReactionYou should definitely try IVIG.Since this was brought on by covid it is possible it could help you.I don't think trying steroids would hurt you either for a short amount of time.I really thought I was going to die because I had lost so much weight.Steroids are a miracle drug.Thankyou for letting me know about those sites.I will check them out.I know what you are saying about regretting going out.I only got the Pfizer vaccine and no boosters,but I was so careful for three years.I pretty much worked at my office for three years by myself.Than I decided to take a girls trip to the Beach.Five days later I had a reaction and it was all downhill from there.Covid attacked my whole central nervous system.It was basically like I went into permanent fight or flight.I believe when covid attacks the body it brings on phychosis along with reactivating any kind of autoimmune ot virus in your body.Even my hair is different now.I use to have long straight hair and now it looks like chemo hair.It almost changes the DNA.Crazy!
-
Like -
Helpful -
Hug
1 ReactionI was first diagnosed October 2020 with my first bought of Covid. At the time I had not had the shot. After having Covid (bad flu like symptoms for 3-4 days), I had new symptoms after having it. Heart palpitations, muscle twitching, spasms, internal vibrations, etc… I’ve been checked out by every specialist out there. A neurologist thought maybe MS or ALS, but in 4 years I’ve not had any other symptoms for those two diseases. I’ve seen a cardiologist who swears there is nothing wrong with my heart. The sporadic heart beats and high heart rate at times come out of no where. All this to say, no, I have not found a solution or anything to help the fasciculations (twitching). It’s very scary! Some days it makes you think am I going to see tomorrow? I’m glad to know that I am not the only one with the symptoms. Big hugs to everyone out there suffering with Long Covid! ♥️
I just stumbled upon this thread. I also developed sympotms of internal vibrations which I originally blamed on Covid but now I truly believe my tremors are the result of Klonopin, which is a nasty Benzo medication a sleep doc. put me on around the same time. After being on it for a month or so I noticed tremors beginning. Body buzzing during the day as well, felt at times like I was sitting on an outdoor AC unit while it was running. I blamed Covid but then realized it might be this new med. After taking it for 7 months I stopped cold turkey, which is very dangerous. Now more than a year later my buzzing has completely stopped but I still notice inner vibrations at nighttime only. Unfortunately I read the withdrawal of this medication, especiually when not weaned at a slow pace, can linger for several months even years. I saw a neurologist who found nothing wrong with me. I also thought I was developing MS or Parkinsons at one point. Crazy stuff. My primary couldn't believe sleep doc gave me this nasty Benzo. I hope you find peace at some point but I don't think it will harm you although its frightening for sure.
-
Like -
Helpful -
Hug
5 ReactionsI’m in the Uk with now over 4 years 4 months of Long Covid…don’t get to see specialists , and even ones we get referred to don’t see, if lucky a phone call, or just dismissed after various scans ( chest X-rays, ecgs, echocardiogram, breathing tests)… So being left with high BP, high HR, breathlessness, fatigue and no sense of smell, and only ‘remedy’ being 5 different BP drugs. Even a Falls Consultant with a tilt test table, a 4 hour journey to/from home, who diagnosed postural hypotension ( not POTS) along with hypertension on sitting, just juggled the BP drugs. So last 18 months looking for any DIY improvements: swim 50 mins 5x a week, and intermittent fast 16:8 then ( no statistical improvements for BP or weight but must be doing me good!). More recently looking at research on vitamins/ minerals and likely deficiencies in Long Covid sufferers…bit ambiguous whether people were short before they caught covid, or whether covid and LC has caused them. You’ll find lots on B12, vit D, ferritin/iron, also vit C, thiamin/B1, Magnesium etc etc, plus supplements like Alpha Lipoic Acid, nattokinase, Augmented NAC etc. I’m surprised I don’t clatter when I walk! But these additions have been added slowly, say only one change/ addition a month. This last week I started B1/Benfotiamine said to be of use for high HR/ postural hypotension ( and just found out also for pre existing diabetes)…little work done on it as Big Pharma can’t patent it. Have you considered low B12 for neurological symptoms ( which can be easily / cheaply tested …best as ‘active’ B12)?
-
Like -
Helpful -
Hug
2 ReactionsTry Stellate Ganglion Block. I had my first on this past May 29 and my recovery as really gotten exponentially better. The tremors has been my main Long-haulers symptom for three years. The first thing that started helping was daily dosing of L-theanine (which I still take). It is is extracted from green & black tea and is the substance in tea that helps relax our nervous system. The next thing that helped some more was Anti-anxiety med from Cleveland Clinic's post COVID recovery neuro and migrain doc. The final thing that has jumped my recovery to where my body felt before the COVID is the Stellate Ganglion Block. The SGB has essentially eliminated my body's reactivity that cycled tremors, even though I still feel the Long Hauler effects in my brain, my body does not react to my brain Long-haulers signals anymore. I'm going to get a second SGB done in August in hopes it can calm my brain too. The final piece is getting good sleep, which the C19 virus was also aimed at disrupting (remember?) as our nervous system need real down time to reset, otherwise we are just left with a hyper-reactive nervous system stuck in a kind of "catastrophic" feedback loop. I hope you can all benefit from these helps that have helped me! God bless, and don't stop fighting!
While I hate that other people are dealing with this, it is nice to find out I'm not the only one. I got Covid in Sept of 2020 and noticed a few muscle spasms in my legs that eventually went away, but then after each (2 in total) Moderna vaccines the muscle spasms got way worse and never went away. I eventually had an EMG and was diagnosed with benign muscle fasciculations. I have them everyday in my legs and sometimes in my back and arms. I take gabapentin which helps but doesn't make them go away. Most days they are just annoying, but some days are really bad with pain and trouble sleeping. I haven't figured out what makes them worse on my bad days.
Hi,
No idea if my symptoms are due to covid or not. Active and otherwise healthy 57 yo male, all the usual testing normal:
- initial symptom: difficulty speaking, especially when tired.
- at approximately 5 months, weird sensation in left arm (only way to describe it - it felt weak but wasn’t weak)
- 5.5 months, same sensation left face.
- 6 months, both legs, body wide fasciculations and internal buzzing.
- 6 months, pain in left hamstring.
- 6 months random spastic movements mostly when sleeping. Clenching of right hand, extension of right forearm, biting tongue.
- 8 months toe cramping.
- all symptoms get better with 3 days of rest, and get an order of magnitude worse 2-3 days after hard exercise (classic PEM).
- also hard to explain, but it feels like this is moving through my body. The face and left arm are barely noticeable to me now, but legs are hugely noticeable. My mountain bike rides are at about 70% of what I used to do before I hit a wall. It is nothing to do with fitness.
-
Like -
Helpful -
Hug
2 ReactionsWelcome @dt200r, You mentioned your symptoms were classic PEM. I did find some information that might be helpful while you wait for other members to respond.
"The pathognomonic symptom of ME/CFS is post-exertional malaise (PEM) or post-exertional symptom exacerbation."
-- Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
Did your doctors mention PEM or ME/CFS?
-
Like -
Helpful -
Hug
1 Reaction