1. < Brain & Nervous System

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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lubelle | @lubelle | Feb 28, 2023
In reply to @katcollins "I am so sorry your son is going through this. I have often said I feel..." + (show)
@katcollins

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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Hi Kat, thank you. I am on another forum called stuff that works that also gathers data via questions. Many of the people with SFN seem to have mal de debarquement and see recommendations to “the Steady Coach” which you can see samples on you tube. Hopeful this will help with my sons balance. Best of luck to you!

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katcollins | @katcollins | Feb 28, 2023
In reply to @lubelle "Hi Kat, thank you. I am on another forum called stuff that works that also gathers..." + (show)
@lubelle

Hi Kat, thank you. I am on another forum called stuff that works that also gathers data via questions. Many of the people with SFN seem to have mal de debarquement and see recommendations to “the Steady Coach” which you can see samples on you tube. Hopeful this will help with my sons balance. Best of luck to you!

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Hello Lubelle,

A second neurologist diagnosed me with Migraine associated vertigo last week. She recommended Vestibular therapy, so I am hoping that helps with the balance issues. I have not heard of mal de debarquement but I will do some research on it. Best of luck to you and your son!
Kat

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siragusas | @siragusas | Mar 17, 2023

I just made a post. I left out involuntary twitching. It’s in my arms I’ve literally flung my phone out of my hands uncontrollably. I have been diagnosed with a subependymoma

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sak789 | @sak789 | Aug 29, 2023

scarysymptoms.com

i found this great website that helps to ease my anxiety!

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jt67 | @jt67 | Jan 30 8:08pm
In reply to @lubelle "I’m on here to research for my son who is also 38 years old. After sudden..." + (show)
@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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There is a list of neurotoxic medications that can make neuropathy worse, and prilosec is one of them. You can find it on the cmt usa website

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