Toe twitching/fasciculations?!

Posted by ecann32 @ecann32, Jan 12, 2022

Hi there, I must say that I am stone-cold terrified after a little over a month of toe twitching. I am a 52 year old female. These are involuntary movements affecting both feet, multiple toes, but especially my big and fourth toes. I have no muscle weakness. Has anyone else had this, or does anyone have any expertise to weigh in? Some more background: I can see twitching on and off in the arches of my feet, and this morning I noticed some twitching in my left inner heel. Until now, the twitching had been worse on the right foot. This started about 4.5 weeks ago with a bad bout of cramping in both feet. Exercise /physical energy has not been affected. I actually had a normal neuro visit about 2 weeks in (in so far as office tests, EEG & EMG). Of course I was encouraged by the unremarkable EMG, but have recently heard that this may have been too early to diagnose A**? Which I am extremely worried about. Then to go further, I had a 3-day migraine-like headache this past weekend. I have always had period migraines, but since I went into immediate menopause (torsed ovary), my migraines have changed to this dull, 1-sided ache that causes nausea and is resistant to my normal Advil. Lastes 2 days. Also, that 1 side gets very stuffed up. The bottom line is that now, in addition to A** I am convinced that the alternative is a brain tumor, after reading that brain tumor headaches present exactly this way! I have gotten these same headaches about one every 3 mos. for the last 1.5 years or so. Of course, as a lifetime migrainer, I didn't think they were so much cause for concern. I even went to the ER one, although the headache subsided when I was admitted and they dx'd me with benign position vertigo. One thing I noticed was that in the last 2 days, (basically during the migraine), the foot twitches died down/went away! However, now that the migraine is gone, my toes/feet have been twitching all morning.
1. Is there anyone else who has entered into the hell of this toe-twitching?
2. Is there a medical professional who might have an opinion about all of this? I am awaiting MRI's of brain/spine. Thank you!

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@kwall1

Hi, does anyone know what could be causing tightness with twitches in legs and feet. Also with toe spasms and occassional burning. Been to 2 neurologists and had EMG, brain scan and mri of thoracic and spine done. Doctor said that I do not have neuropathy but 4th and 5th toes are numb and feet feel like I'm walking on lumps. Symptoms getting worse each week.

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Since the vaccine I have had spasms and twitching/fasciculations in lower legs; have had all the tests done, MRI, EMG etc. and my last one was 6 weeks ago to test for Small Fibre Neuropathy (SFN); it was a day outpatient visit at a specialized hospital and waiting time was 9 months; I had 12 tubes of blood taken, urine, and chest X-ray and temperature test on legs, feet and hands, and skin biopsy. Results in 2 weeks.
After the results I will have some kind of closure knowing I have done all that I can to find out the cause, even if this test does not show up anything.
Maybe it’s an idea to have that test done….

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Toe spasms were my first symptom of an adverse neurological reaction to the Pfizer vaccine. I eventually developed sensory and motor peripheral neuropathy as documented by EMG. I had muscle fasciculations, as do many people who had vaccine injuries. I'm much better now at 19 months.

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@ecann32

It has now been about six weeks of this strangeness, thankfully no sensation of weakness.

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Hi there. Did you ever find out what was causing this? Did it resolve? I have the same issue of my arch/inside heel area twitching which also makes my toes move.

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@dev1984

Hi there. Did you ever find out what was causing this? Did it resolve? I have the same issue of my arch/inside heel area twitching which also makes my toes move.

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Hello @dev1984 and welcome to Mayo Clinic Connect. I see you found similarities in your journey in what @ecann32 has shared in this discussion and sounds like you'd like to connect so I've used their handle to notify them for you!

How long have you experienced your symptoms?

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@amandajro

Hello @dev1984 and welcome to Mayo Clinic Connect. I see you found similarities in your journey in what @ecann32 has shared in this discussion and sounds like you'd like to connect so I've used their handle to notify them for you!

How long have you experienced your symptoms?

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Thank you. It’s been a week and a half or so. It was preceded by twitching/fluttering feeling in my perenium. That was happening for almost three months. That has since gone way. I’m 38, male, and am very healthy otherwise. My only thought is it is stress related.

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@pacer3702

Toe spasms were my first symptom of an adverse neurological reaction to the Pfizer vaccine. I eventually developed sensory and motor peripheral neuropathy as documented by EMG. I had muscle fasciculations, as do many people who had vaccine injuries. I'm much better now at 19 months.

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I had the Moderna booster in January and the muscle twitching (benign fasciculations) started in February. I’ve had every test out there for the past 6 months and no changes to my supplements or meds has helped, so outside of ruling out the bad neurological diseases, the answer is pretty much neurological vaccine injury. Glad to hear it has gotten better over time….I can remain hopeful that mine too someday will subside.

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@pacer3702

Toe spasms were my first symptom of an adverse neurological reaction to the Pfizer vaccine. I eventually developed sensory and motor peripheral neuropathy as documented by EMG. I had muscle fasciculations, as do many people who had vaccine injuries. I'm much better now at 19 months.

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I'm curious, how soon after getting the vaccine did you develop symptoms? When you say muscle fasciculations, you mean where parts of your body bump/twitch, like it has a heartbeat?

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The toe spasms began within 2 weeks of the first vaccination. After the nerve damage progressed to peripheral neuropathy, I developed random muscle twitches in my legs and, less often, in my arms. Many vaccine-injured people are reporting these twitches. For some, the twitches occur with a regular pattern such as you describe.

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@dev1984

Thank you. It’s been a week and a half or so. It was preceded by twitching/fluttering feeling in my perenium. That was happening for almost three months. That has since gone way. I’m 38, male, and am very healthy otherwise. My only thought is it is stress related.

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I’m on here to research for my son who is also 38 years old. After sudden onset of his muscles locking, heart pounding, skin burning, wet skin feeling, going to ER, primary doctors prescribing antidepressants, we finally got to a neurologist which ordered mri snd skin biopsy punch test. It’s been 18 months since diagnosis.
My son was diagnosed with SFN. He is very athletic and is now suffering with the constant leg muscle twitching, balance issues, skin feels wet at times, or has no feeling most if time. He will not take drugs after being shoved the antidepressants. He also has constant acid reflux but has found that all the products like Prilosec and omezeprole seem to increase SFN symptoms. He did not have covid vaccine, but did have 2 small bouts of covid. Also when this started it was like “a bomb went off” in his body. He has been struggling with it ever since. Stress definitely has an impact. Also he lives in an area without good medical access without plane trip. He has tried vegan diet, then went to extreme opposite of meat only which actually felt a bit better. Now is doing a well balanced diet. Diet doesn’t seem to have huge impact either way.
He tried higher doses of vitamin B, not sure which one but his labs said all levels were fine.
Has tried low dose naltrexone but gave up after getting to 2.5 mg I believe. Didn’t help much.
He has tried Browns gas. He felt like he had some relief but us quite a setup and investment in the machine and time on the machine.
Balance issues are his current challenge. He says he feels like he is getting off a boat with sea legs upon standing. It’s preventing this athletic young man from running and the balance is a stressor.
His neurologist has said she has seen many similar cases and sometimes it has disappeared as fast as it came on. This gives us hope.
Please keep trying to investigate treatments in hopes we can someday come up with “idiopathic” cure. Very frustrating that neuropathy doesn’t seem to peak curiosity of more researchers as to why it suddenly appears.
I wish you well and pray for all who have neuropathy that someday we can find you relief!

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@lubelle

I’m on here to research for my son who is also 38 years old. After sudden onset of his muscles locking, heart pounding, skin burning, wet skin feeling, going to ER, primary doctors prescribing antidepressants, we finally got to a neurologist which ordered mri snd skin biopsy punch test. It’s been 18 months since diagnosis.
My son was diagnosed with SFN. He is very athletic and is now suffering with the constant leg muscle twitching, balance issues, skin feels wet at times, or has no feeling most if time. He will not take drugs after being shoved the antidepressants. He also has constant acid reflux but has found that all the products like Prilosec and omezeprole seem to increase SFN symptoms. He did not have covid vaccine, but did have 2 small bouts of covid. Also when this started it was like “a bomb went off” in his body. He has been struggling with it ever since. Stress definitely has an impact. Also he lives in an area without good medical access without plane trip. He has tried vegan diet, then went to extreme opposite of meat only which actually felt a bit better. Now is doing a well balanced diet. Diet doesn’t seem to have huge impact either way.
He tried higher doses of vitamin B, not sure which one but his labs said all levels were fine.
Has tried low dose naltrexone but gave up after getting to 2.5 mg I believe. Didn’t help much.
He has tried Browns gas. He felt like he had some relief but us quite a setup and investment in the machine and time on the machine.
Balance issues are his current challenge. He says he feels like he is getting off a boat with sea legs upon standing. It’s preventing this athletic young man from running and the balance is a stressor.
His neurologist has said she has seen many similar cases and sometimes it has disappeared as fast as it came on. This gives us hope.
Please keep trying to investigate treatments in hopes we can someday come up with “idiopathic” cure. Very frustrating that neuropathy doesn’t seem to peak curiosity of more researchers as to why it suddenly appears.
I wish you well and pray for all who have neuropathy that someday we can find you relief!

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I am so sorry your son is going through this. I have often said I feel like I am on a boat rocking. I get extreme dizziness and I cannot walk or talk at moments when it hits. I hope he finds relief and answers soon. All of us on here understand what he is going through.
Kat

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