u/cTheDeezy

Follow up to my initial post: https://www.reddit.com/r/BFS/s/wnUIoxY0ng

Since then I’ve been mostly successful in putting the twitching in the background and I have been back to enjoying my life and back to sports and walking an average of 13,000 steps a day in August even though my twitches are now literally everywhere. They pop up every few seconds in a different muscle in my body and stay there for a few seconds to a few minutes and then move with my calves and foot arches being constant 24/7.

Something that started happening 2 days ago is that my foot arch fasciculations have become so heavy and severe that they cause popping but also cause my big toe to move away from the other toes and this causes a very painful cramp. It mostly happens when I have no shoes or socks on and when I am laying down on a couch or bed. It is extremely painful and uncomfortable and while I have been able to ignore the twitching, this is tough to ignore and is leading to difficulties sleeping. The cramps also happen whenever I am swimming. Magnesium glycinate used to reduce my twitching but now it does not anymore and certainly does not reduce the cramping.

Has anyone experienced this and found any solutions and something that has helped them sleep?

Thanks

23M- Did not want to make this post because if this is all indeed health anxiety causing this like my family and doctors have been telling me then it will feed the loop but I am not convinced - but like many here I am worried of the 3 letter big bad disease…

Everything started on April 27th, with diarrhea for a day like I always get at random times and then some mild feet tingling and buzzing for a few weeks. Got tested for GBS and other things and even got MRI of brain and spine and everything was normal. Only things that were elevated were the CK and TSH (thyroid). They both came back to normal when retested a week later. That was the end of the sensory symptoms.

On or around May 22nd, I started feeling twitching in my right inner foot arch and that would often cause my toe to move by itself. The next day this spread to my left foot. About a week later I started seeing twitching in my calves 24/7 as well as my foot arches all simultaneously. Then I started having to swallow two times per sip of water. So I went to a neurologist and he did a 22 muscle EMG/NCS including the tongue. All came back normal and did not show fasciculations even though he was seeing them as he was doing the test. I worry that this EMG done 12 days after the start of symptoms was done too early…

After the EMG is when symptoms have started exploding especially since July started. The twitching is still 24/7 in both calves and feet but now much more frequent and noticeable and causes cramps in my feet. I also now get them throughout the body, by that I mean that every 5 minutes or so twitching starts somewhere for a few seconds and stops. So it pops up in my left shoulder and stops. Then in my stomach and stops. My tongue and stops, then in my neck and stops… Throughout the day. And each day worse than the one before.

I went to my neurologist again due to all these developments and he examined me and said I have hyper reflexia and could see the increase in twitching so he referred me to Duke and when I asked how many people he referred there this year, he said I was the first one… So that obviously worried me a lot.

I was able to get in the next day Tuesday July 14th, with a neuromuscular specialist at an ALS clinic, and she said I have 5/5 strength everywhere but do have brisk reflexes in my upper extremities and positive Hoffman symmetrically. No babinski, clonus, jaw jerk, or atrophy. She said fasciculations alone are not worrying but she will repeat an EMG in 3 months to see if anything changes. I do not know how I can wait these 3 months…

I was at the gym 2 days ago and my left bicep reached failure after 4 reps on a bicep curl when my right could go 10 normally. This was also 5LBS less than the weight I did 2 weeks ago… I also get tired in my left fingers and the muscle between the thumb and index cramps when just carrying groceries… I am a righty for reference but that never happened before.

I don’t know what to think at this point but symptoms are clearly progressing day after day where I feel worse each new day and I have both UMN and LMN signs… I was tested for deficiencies and autoimmune conditions and have none of those…

Does anyone else have the same twitching pattern or onset? Or even something that started and spread like this with UMN signs?

I am still waiting to get scheduled at Duke.

Thanks all!

23M- Did not want to make this post because if this is all indeed health anxiety causing this like my family and doctors have been telling me then it will feed the loop but I am not convinced - but like many here I am worried of the 3 letter big bad disease…

Everything started on April 27th, with diarrhea for a day like I always get at random times and then some mild feet tingling and buzzing for a few weeks. Got tested for GBS and other things and even got MRI of brain and spine and everything was normal. Only things that were elevated were the CK and TSH (thyroid). They both came back to normal when retested a week later. That was the end of the sensory symptoms.

On or around May 22nd, I started feeling twitching in my right inner foot arch and that would often cause my toe to move by itself. The next day this spread to my left foot. About a week later I started seeing twitching in my calves 24/7 as well as my foot arches all simultaneously. Then I started having to swallow two times per sip of water. So I went to a neurologist and he did a 22 muscle EMG/NCS including the tongue. All came back normal and did not show fasciculations even though he was seeing them as he was doing the test. I worry that this EMG done 12 days after the start of symptoms was done too early…

After the EMG is when symptoms have started exploding especially since July started. The twitching is still 24/7 in both calves and feet but now much more frequent and noticeable and causes cramps in my feet. I also now get them throughout the body, by that I mean that every 5 minutes or so twitching starts somewhere for a few seconds and stops. So it pops up in my left shoulder and stops. Then in my stomach and stops. My tongue and stops, then in my neck and stops… Throughout the day. And each day worse than the one before.

I went to my neurologist again due to all these developments and he examined me and said I have hyper reflexia and could see the increase in twitching so he referred me to Duke and when I asked how many people he referred there this year, he said I was the first one… So that obviously worried me a lot.

I was able to get in the next day Tuesday July 14th, with a neuromuscular specialist at an ALS clinic, and she said I have 5/5 strength everywhere but do have brisk reflexes in my upper extremities and positive Hoffman symmetrically. No babinski, clonus, jaw jerk, or atrophy. She said fasciculations alone are not worrying but she will repeat an EMG in 3 months to see if anything changes. I do not know how I can wait these 3 months…

I was at the gym 2 days ago and my left bicep reached failure after 4 reps on a bicep curl when my right could go 10 normally. This was also 5LBS less than the weight I did 2 weeks ago… I also get tired in my left fingers and the muscle between the thumb and index cramps when just carrying groceries… I am a righty for reference but that never happened before.

I don’t know what to think at this point but symptoms are clearly progressing day after day where I feel worse each new day and I have both UMN and LMN signs… I was tested for deficiencies and autoimmune conditions and have none of those…

Does anyone else have the same twitching pattern or onset? Or even something that started and spread like this with UMN signs?

I am still waiting to be scheduled at Duke.

Thanks all!