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!
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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.
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!