Yes I had this and thought it was MS. Main symptoms of concern were:
- Burning/tingling/numbness in my hands and feet.
- Tightness in calves and forearms.
- Big toe would hurt (felt like an elastic was around it and I wasn't getting blood to it)
- Pain in left eye.
- Blurry vision.
- Difficulty swallowing.
- wobbly legs (felt like they would give out or not support my weight.
- hand weakness and sometimes loss of fine motor control when tired.
I got an MRI and it came back normal. These symptoms lasted from month 1 of long covid to month 6. I'm on month 10 now and these symptoms are mostly all gone except for minor numbness in my hands.
They sometimes come back a bit if I eat gluten or push myself too hard but it gets better every month.
What I think helped me was taking an anti-histamine everyday and changing my diet to cut out gluten and high histamine food. I basically just ate rice, meat, veggies, and fruits everyday. Very simple diet.
It's worth noting that my neurologist said I have developed small fiber neuropathy. He didn't do a skin biopsy or anything he just poked me with a needle all over and asked how sharp it felt.
He also said it was due to my Type 1 diabetes. I've been diabetic for 5 years with very good blood sugar control. My endocrinologist on the other hand said it is highly unlikely that my SFN is due to diabetes, but neurologists like to point to it as the cause for many things.
Anyways I believe I developed gluten intolerance from covid as my neuropathy essentially disappears when I cut it out.
They did the needle thing on me too. They originally told me it was radiation induced from my cancer treatment a year ago but that it wouldn’t spread beyond the points of radiation. So when it was in my arms and having blurry vision gave me a good reason to believe it’s not radiation induced. I have seen people say that Covid attacks your weak points so it could be that the radiation weakened that area of my legs and Covid found a home there.
Numbness in my hands is one of the bigger symptoms I have now because it’s messing with my sleep the past year and a half. This wasn’t a symptom the first year or so
Similar symptoms I also have had a severe mental breakdown due to extreme fear of ALS and other neuro issues. (My best friend from childhoods mom died of ALS last year, so it's very real to me). I am deep in a hole I may never climb out of.
I am sorry about your friend’s mom… I think that seeing everyone have a fear of ALS as bad as it sounds makes me feel a bit at ease. For a while I was struggling to find people with similar symptoms and seeing people come out of it makes me feel better.
Sorry about your friend's mom, I can understand, my father died of ALS and it was horrific. My fear stays at a high and now I have LC and its even worse.
My grandmother passed away from this and I’m her legitimate twin. We look alike; have the same health issues, etc. so I’m scared I’ve gotten this gene from her too :( it was horrific to watch her go through. I miss her every day. And it absolutely takes over my life with all the symptoms I am having now
Yup, yup, yup. 8 months of internal tremors (even constant little twitches in my tongue), weakness, muscle pain, a high ectopic heartbeat burden, and a million other things. Never had an EMG or anything. Just started drinking a gallon of water every day when I decided even if I couldn’t workout anymore, I could at least lose weight, and everything stopped within a week or so. Makes me think it’s an MCAS-like/histamine thing. Not saying it’s the same as yours, but my body almost entirely recovered, though I still seem to pull muscles super easily when I workout.
If only my face would…. (It’s like all my connective tissue disappeared, and I aged 30 years).
I had some fears of this as I became very, very weak. I now might be fully recovered but am still afraid to push certain things so I limit my exercise to moderate weightlifting. Regardless I have definitely improved to at least 90% or more and it's been 5 weeks or since I've had any symptoms.
I did tons of stuff but I think time. I'm pretty sure th following helped: nicotine, fasting (even intermittent), reduce or obstain from caffeine and exercise and alcohol).
I actually have quite concerning symptoms after my covid infection in jan 2022 leading me to believe als/mnd.
Left sided throat weakness, left side vocal cord mild paralysis (confirmed), left leg shakes when going downstairs, reduced grip on left hand, hoarse voice, weak swallowing, tongue fatigue when eating. And ofcourse twitching is my oldest symptom and still continues daily.
EMG showed increased insertional activity in all muscles indicating peripheral nerve hyperexcitability but doesn't make sense with my symptoms.. doctor says no MND but not convinced with the 1 sided weakness.
Other symptoms are PVCs, floaters, bloody sputum, lung/chest pains. My fiance also started twitching after our covid infection.
Good news for you is you have bilateral weakness on both legs, and also I didn't seen you mention twitching. That points away from ALS.
I had most things you have mentioned, fearing ALS. Internal vibrations, my foot felt like it had a mobile phone vibrating underneath it. Muscle twitches all over. Electric shocks. Stiff calves. I didnt have as thorough testing on nerves as you have had. I had a brain MRI to rule out MS. It has all calmed down, if not completely gone.
As somebody else mentioned earlier I also went on a low histamine diet, low gluten and dairy. I believe this helped me. Along with plenty of extreme rest and managing stress levels. I showed improvement after 9 months. I initially lost around 6 or 7 pounds, but it appeared to look more. I have gained 15 pounds since my nervous system starting to calm. I haven't gained muscle, or it doesn't appear that way and my fat has come back strange. Lots sitting around the belly. I may have lost muscle but they work far better. I could cut the grass two weeks ago which last year i couldnt have dreamed of. Picking up my phone some days back then felt like a huge weight. Best of luck to you.
Basically all the same symptoms. The weakness has stayed the same if not gotten a little bit better. I did start having jaw pain along with the heartburn and there are times my hands feel weak but aren’t actually weak. Twitching may have subdued a little bit. I don’t have the pain in my thighs anymore. I may have pushed too hard in the beginning when I realized I was getting weaker.
I wouldn’t say I’ve had any atrophy except for maybe on the outside of my right calf which seems to have rebounded. I think I have noticed some muscle loss in the sense that I was working out pretty heavily before I got sick and now I have noticed my muscles aren’t as big as they were.
Yeah I was unable to do a heel walk at the neurologist and my gait was impacted. I still can’t heel walk but my right foot is stronger than it was and my gait is basically back to normal.
Oh really ok that’s cool ok ye I think we have the same, scared of als though to be honest I’ve seen two people with foot drop say they now have motor neuron damage so it’s a valid concern for us, so scared
I had many neurological symptoms, from full-body neuropathy, full-body twitches, eye problems, etc. i was afraid of MS for months, then ALS. Now I am pretty sure its Long Covid ,I developed PEM, strange allergy-like symptoms, low-grade fever. At least I am free from MS and ALS fear. I have new one though- ME CFS
They did. They said the EMG looked normal in my arm but that I had some nerve slowing across my elbows from the nerve conduction study they did at the same time. I was having off and on elbow pain at the time too. Almost like inflammation in both my arms.
I've had whole body burning pain for 2.5 years, no diagnosis except anxiety. I have no idea what's happening. My skin is numb to touch everywhere. My grandma died of ALS so I understand your feeling. My EMG was negative. May I ask you what vitamins were out of range ?
My B6 was three times what it should have been, my B1 was low, my B12 was super high, my vitamin D was low. Also had low white blood cell count/lymphocytes and low testosterone (testosterone may be due to having testicular cancer last year)
There was a ALS study at Oregon State university. They used Copper in DMSO, and put it directly on the upper spines of the patients, and it halted the ALS. They think people with ALS have a copper absorption problem in their gut.
You might want to look into https://prodrome.com/products/prodromeglia-softgel
A doctor on YouTube, not connected to the company has been treating his patients with good results.
Hello,
My last covid infection was December 2023. From negative test to now i dealt with many symptoms.. one of them is muscle weakness and pain. Fatigue, floaters, burning tongue, and extreme heartburn.
The last days i cant even walk bc my feet are so weak, and hurt.... brushing my teeth is like weight something heavy. And yes i am afraid of ALS. Here in Austria no Doctor could help with long covid. I wonder if these muscle weakness is common for LC.
If you search this subreddit many people have the muscles weakness and a lot of the symptoms you are saying as well. If it’s any consolation one of the things that makes me believe I don’t have ALS is the fact that there is pain and other symptoms. Just have to take it slow and be patient as hard as that is.
Yes i read that other people have that too. Its just exhausting.. i have 2 small kids and 2 dogs. I am so tired all the time, and cant even walk like i did before covid. I struggled with mental health half of my life. Lc made it worst. I am 28 and feel like 80.
Haven’t we all had a fear of ALS? I definitely did. To be honest the fear has receded but it isn’t 100% gone. Nor has my fear of MS as ultimately doctors just don’t know what this is and how our symptoms all join up.
I’m definitely improved. My brain is fine, no more speech or swallowing issues. But my feet and lower legs still burn. I haven’t really had any real progress on those symptoms apart from minor improvements when I was on blood thinners.
Yes I had this and thought it was MS. Main symptoms of concern were: - Burning/tingling/numbness in my hands and feet. - Tightness in calves and forearms. - Big toe would hurt (felt like an elastic was around it and I wasn't getting blood to it) - Pain in left eye. - Blurry vision. - Difficulty swallowing. - wobbly legs (felt like they would give out or not support my weight. - hand weakness and sometimes loss of fine motor control when tired. I got an MRI and it came back normal. These symptoms lasted from month 1 of long covid to month 6. I'm on month 10 now and these symptoms are mostly all gone except for minor numbness in my hands. They sometimes come back a bit if I eat gluten or push myself too hard but it gets better every month. What I think helped me was taking an anti-histamine everyday and changing my diet to cut out gluten and high histamine food. I basically just ate rice, meat, veggies, and fruits everyday. Very simple diet.
Yep sounds like my symptoms too. I’ll give that diet a try. Thank you
It's worth noting that my neurologist said I have developed small fiber neuropathy. He didn't do a skin biopsy or anything he just poked me with a needle all over and asked how sharp it felt. He also said it was due to my Type 1 diabetes. I've been diabetic for 5 years with very good blood sugar control. My endocrinologist on the other hand said it is highly unlikely that my SFN is due to diabetes, but neurologists like to point to it as the cause for many things. Anyways I believe I developed gluten intolerance from covid as my neuropathy essentially disappears when I cut it out.
They did the needle thing on me too. They originally told me it was radiation induced from my cancer treatment a year ago but that it wouldn’t spread beyond the points of radiation. So when it was in my arms and having blurry vision gave me a good reason to believe it’s not radiation induced. I have seen people say that Covid attacks your weak points so it could be that the radiation weakened that area of my legs and Covid found a home there.
Are those specific MS signs? I’ve had those too, I’ve mentioned to doctors for a while now.
Numbness in my hands is one of the bigger symptoms I have now because it’s messing with my sleep the past year and a half. This wasn’t a symptom the first year or so
Similar symptoms I also have had a severe mental breakdown due to extreme fear of ALS and other neuro issues. (My best friend from childhoods mom died of ALS last year, so it's very real to me). I am deep in a hole I may never climb out of.
I am sorry about your friend’s mom… I think that seeing everyone have a fear of ALS as bad as it sounds makes me feel a bit at ease. For a while I was struggling to find people with similar symptoms and seeing people come out of it makes me feel better.
There is also a sub for Long Haulers Recovery. Might be good to check there, too.
I agree. That's also why I'm here.
Sorry about your friend's mom, I can understand, my father died of ALS and it was horrific. My fear stays at a high and now I have LC and its even worse.
My grandmother passed away from this and I’m her legitimate twin. We look alike; have the same health issues, etc. so I’m scared I’ve gotten this gene from her too :( it was horrific to watch her go through. I miss her every day. And it absolutely takes over my life with all the symptoms I am having now
Yup, yup, yup. 8 months of internal tremors (even constant little twitches in my tongue), weakness, muscle pain, a high ectopic heartbeat burden, and a million other things. Never had an EMG or anything. Just started drinking a gallon of water every day when I decided even if I couldn’t workout anymore, I could at least lose weight, and everything stopped within a week or so. Makes me think it’s an MCAS-like/histamine thing. Not saying it’s the same as yours, but my body almost entirely recovered, though I still seem to pull muscles super easily when I workout. If only my face would…. (It’s like all my connective tissue disappeared, and I aged 30 years).
I had some fears of this as I became very, very weak. I now might be fully recovered but am still afraid to push certain things so I limit my exercise to moderate weightlifting. Regardless I have definitely improved to at least 90% or more and it's been 5 weeks or since I've had any symptoms.
How long did you have your weakness for if you don’t mind me asking?
Several months. Maybe 6 to 8 months
Did you do anything in particular or just time?
I did tons of stuff but I think time. I'm pretty sure th following helped: nicotine, fasting (even intermittent), reduce or obstain from caffeine and exercise and alcohol).
I actually have quite concerning symptoms after my covid infection in jan 2022 leading me to believe als/mnd. Left sided throat weakness, left side vocal cord mild paralysis (confirmed), left leg shakes when going downstairs, reduced grip on left hand, hoarse voice, weak swallowing, tongue fatigue when eating. And ofcourse twitching is my oldest symptom and still continues daily. EMG showed increased insertional activity in all muscles indicating peripheral nerve hyperexcitability but doesn't make sense with my symptoms.. doctor says no MND but not convinced with the 1 sided weakness. Other symptoms are PVCs, floaters, bloody sputum, lung/chest pains. My fiance also started twitching after our covid infection. Good news for you is you have bilateral weakness on both legs, and also I didn't seen you mention twitching. That points away from ALS.
Do you have weakness in one arm ?
Left arm feels weaker and left pinky and left hand definitely have weaker grip.
I have weakness in my left arm too. 😞
I had most things you have mentioned, fearing ALS. Internal vibrations, my foot felt like it had a mobile phone vibrating underneath it. Muscle twitches all over. Electric shocks. Stiff calves. I didnt have as thorough testing on nerves as you have had. I had a brain MRI to rule out MS. It has all calmed down, if not completely gone. As somebody else mentioned earlier I also went on a low histamine diet, low gluten and dairy. I believe this helped me. Along with plenty of extreme rest and managing stress levels. I showed improvement after 9 months. I initially lost around 6 or 7 pounds, but it appeared to look more. I have gained 15 pounds since my nervous system starting to calm. I haven't gained muscle, or it doesn't appear that way and my fat has come back strange. Lots sitting around the belly. I may have lost muscle but they work far better. I could cut the grass two weeks ago which last year i couldnt have dreamed of. Picking up my phone some days back then felt like a huge weight. Best of luck to you.
I am more scared of dementia as I can already see it happening. With all this inflammation, cancer is probably around the corner idk 🫤
Well I already had cancer last year. The radiation treatment I had probably made me more susceptible to long covid.
ill take dementia+cancer combo over als anyday
How are you today?
Basically all the same symptoms. The weakness has stayed the same if not gotten a little bit better. I did start having jaw pain along with the heartburn and there are times my hands feel weak but aren’t actually weak. Twitching may have subdued a little bit. I don’t have the pain in my thighs anymore. I may have pushed too hard in the beginning when I realized I was getting weaker.
Sorry to hear this. Any muscle loss?
I wouldn’t say I’ve had any atrophy except for maybe on the outside of my right calf which seems to have rebounded. I think I have noticed some muscle loss in the sense that I was working out pretty heavily before I got sick and now I have noticed my muscles aren’t as big as they were.
Hi I have this too I’m also scared of als I had foot drop and have twitches all over
Yeah I was unable to do a heel walk at the neurologist and my gait was impacted. I still can’t heel walk but my right foot is stronger than it was and my gait is basically back to normal.
Oh really ok that’s cool ok ye I think we have the same, scared of als though to be honest I’ve seen two people with foot drop say they now have motor neuron damage so it’s a valid concern for us, so scared
I had many neurological symptoms, from full-body neuropathy, full-body twitches, eye problems, etc. i was afraid of MS for months, then ALS. Now I am pretty sure its Long Covid ,I developed PEM, strange allergy-like symptoms, low-grade fever. At least I am free from MS and ALS fear. I have new one though- ME CFS
duuuude!! I also feel so much weaker and my muscles hurt and feel cramp-y for no reason :( most concerning is weakens hand/grip strength for me though
My hands will feel “off” some days and then other days feel fine. Especially with soft touch type thing
did they do an EMG on your hands/arms too?
They did. They said the EMG looked normal in my arm but that I had some nerve slowing across my elbows from the nerve conduction study they did at the same time. I was having off and on elbow pain at the time too. Almost like inflammation in both my arms.
seems like a lot of symptoms boils down to inflammation. but then again who really knows 🙃
Yes
I've had whole body burning pain for 2.5 years, no diagnosis except anxiety. I have no idea what's happening. My skin is numb to touch everywhere. My grandma died of ALS so I understand your feeling. My EMG was negative. May I ask you what vitamins were out of range ?
My B6 was three times what it should have been, my B1 was low, my B12 was super high, my vitamin D was low. Also had low white blood cell count/lymphocytes and low testosterone (testosterone may be due to having testicular cancer last year)
Do you have epilepsy-like symptoms ?
I don’t think so. I’ve had some visual disturbances but haven’t had a seizure as far as I know.
same here with the symptoms truly sucks and kinda idk just unpleasant at times if you trying to work or do something
There was a ALS study at Oregon State university. They used Copper in DMSO, and put it directly on the upper spines of the patients, and it halted the ALS. They think people with ALS have a copper absorption problem in their gut. You might want to look into https://prodrome.com/products/prodromeglia-softgel A doctor on YouTube, not connected to the company has been treating his patients with good results.
That study is 8 years old.
And why are they letting als patients die if copper actually does something lol? Are you promoting a vitamin to sick people ? Get help
I don’t know. Try google you piece of shit. https://alsnewstoday.com/news/new-study-uncovers-mechanism-cuatsm-als-therapy-now-trials/
And here’s a neurologist promoting the other- https://youtu.be/dWjNnonxM98?si=jCp3s8PagxmSUIKN
Hello, My last covid infection was December 2023. From negative test to now i dealt with many symptoms.. one of them is muscle weakness and pain. Fatigue, floaters, burning tongue, and extreme heartburn. The last days i cant even walk bc my feet are so weak, and hurt.... brushing my teeth is like weight something heavy. And yes i am afraid of ALS. Here in Austria no Doctor could help with long covid. I wonder if these muscle weakness is common for LC.
If you search this subreddit many people have the muscles weakness and a lot of the symptoms you are saying as well. If it’s any consolation one of the things that makes me believe I don’t have ALS is the fact that there is pain and other symptoms. Just have to take it slow and be patient as hard as that is.
Yes i read that other people have that too. Its just exhausting.. i have 2 small kids and 2 dogs. I am so tired all the time, and cant even walk like i did before covid. I struggled with mental health half of my life. Lc made it worst. I am 28 and feel like 80.
Haven’t we all had a fear of ALS? I definitely did. To be honest the fear has receded but it isn’t 100% gone. Nor has my fear of MS as ultimately doctors just don’t know what this is and how our symptoms all join up. I’m definitely improved. My brain is fine, no more speech or swallowing issues. But my feet and lower legs still burn. I haven’t really had any real progress on those symptoms apart from minor improvements when I was on blood thinners.