Worried2023
Member
- Joined
- Mar 7, 2023
- Messages
- 10
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hi Everyone,
I've been trying to avoid posting, until I take my EMG which is scheduled next Wednesday but I'm unable to function from day to day, and was hoping that maybe I'm down the wrong rabbit hole.
I'm a 41 y/o M, I've been having ongoing health issues for almost 3 years, however the most recent symptoms which bring me here started around December of 2022, but got more pronounced about 3 weeks ago. I had previously been taking Xanax and Labetalol to help me sleep through the night / get through the day, but discontinued these in December going from 2mg/day (Xanax) to nothing. I was only on the Xanax for a few months maybe 3. During the period of stopping my children got HFM and I got sick, and I mean really sick, had a fever for 3 days and my body was defiantly attacking itself. I felt as if I would die. I had to stop my Labetalol (200mg/day) at this time because I felt so weak, and immediately after stopping that I had a burst of energy that I hadn't had for a while. I was on this drug for 6 months or so at this point.
During my sickness I started feeling like everything was in stop motion. My muscles were jittery / felt weak, my vision was flashing (in sync with the jitteriness) and I was short of breath. Finally I had to resume the Xanax because it was the only thing that calmed everything else down and gave me some rest. I hadn't gotten sleep at this stage for 4+ days. After resuming and getting through the sickness, and some much needed sleep, I started feeling really weak when I would wake up, and my movements became more and more jittery. Eventually I tapered off Xanax and stopped completely about 3 weeks ago which is when I started getting fasciculations all over my body. My strength in my muscles seem to have recovered somewhat and I am less jittery and my legs don't feel like they will give out as much anymore (good sign I think?)
However something that has stuck with me and has me most concerned is my jaw seems to chatter together if I stretch my lower jaw out a little and try to hold my front teeth together. Its a high frequency low amplitude "tremor". It's made worse if I tilt my head backwards and look to the ceiling. I also noticed my tongue will twitch every now and then randomly if I focus on it. If I rest it and really try to relax it, it rarely twitches and if it does its only in the center not all over (I think). I've also evaluated my body at this point, and surprisingly noticed my right side (which is my dominate side) seems smaller than my left. I've looked at pictures and to make sure I wasn't going crazy and I do notice a difference but it's most likely marginal at this point.
I've also been getting tendons popping all over my body in my feet, hands, and wrists. Sometimes I will wake up and half my hands will be numb (pinky, ring, and middle), if I stretch them out and lay my arms flat the sensation returns. It seems that they are cramping up during the night. My legs and calves also feel like they are cramping. At one point I did have hyperreflexia on my right side but that seems to have gone away. I've been trying to stretch and massage my muscles as much as I can which seems to help. I've started taking Vitamin D, Magnesium, B12, and Calcium, which may be helping but not 100% sure. My legs are restless as well, I constantly want to move them and bounce them up and down.
One thing that actually helps slow down and almost stop the fasciculations is bringing my legs in close to my body, and/or resting them in a reclined position on the couch which I feel is very odd. My head also feels better when I'm in those positions like it's not working as hard or something. I can't explain it well but it's very odd. I haven't had a day without fasciculations and when I get them they bounce all over my body from my calves, arch of my foot, lower back, bottom, torso, arms, hands, shoulders, stomach etc... If I stretch my muscles or use them that also seems to kick off the fasciculations, for example when I first wake up seems like my body hasn't had any but I stretch and boom they all kick off.
I read that benzodiazepine withdrawal can cause fasciculations, as well as a lot of the symptoms I am having, and I'm really hoping this is the case but the tongue / jaw pulses / tremor have me really concerned. I have also read there are some post viral things that can cause some of the symptoms that I have been experiencing as well.
I mentioned these new symptoms to my Neurologist who immediately ordered an EMG, but that isn't for another week. I'm trying not to lose hope but I'm in the middle of all of this right now and my mind is hyper focused on these new symptoms and I can't get reprieve. He originally diagnosed me with Benign Essential Tremor but this was prior to the fasciculations.
I have read the read before posting thread, and understand that there are nuances to everyone's experiences so I hope I don't offend anyone by posting. I've been living in a nightmare for the last few months and I want to wake up.
I appreciate all of your time reviewing these symptoms and providing feedback! I will make sure to post my EMG results after I receive them to this thread for everyone to review.
I've been trying to avoid posting, until I take my EMG which is scheduled next Wednesday but I'm unable to function from day to day, and was hoping that maybe I'm down the wrong rabbit hole.
I'm a 41 y/o M, I've been having ongoing health issues for almost 3 years, however the most recent symptoms which bring me here started around December of 2022, but got more pronounced about 3 weeks ago. I had previously been taking Xanax and Labetalol to help me sleep through the night / get through the day, but discontinued these in December going from 2mg/day (Xanax) to nothing. I was only on the Xanax for a few months maybe 3. During the period of stopping my children got HFM and I got sick, and I mean really sick, had a fever for 3 days and my body was defiantly attacking itself. I felt as if I would die. I had to stop my Labetalol (200mg/day) at this time because I felt so weak, and immediately after stopping that I had a burst of energy that I hadn't had for a while. I was on this drug for 6 months or so at this point.
During my sickness I started feeling like everything was in stop motion. My muscles were jittery / felt weak, my vision was flashing (in sync with the jitteriness) and I was short of breath. Finally I had to resume the Xanax because it was the only thing that calmed everything else down and gave me some rest. I hadn't gotten sleep at this stage for 4+ days. After resuming and getting through the sickness, and some much needed sleep, I started feeling really weak when I would wake up, and my movements became more and more jittery. Eventually I tapered off Xanax and stopped completely about 3 weeks ago which is when I started getting fasciculations all over my body. My strength in my muscles seem to have recovered somewhat and I am less jittery and my legs don't feel like they will give out as much anymore (good sign I think?)
However something that has stuck with me and has me most concerned is my jaw seems to chatter together if I stretch my lower jaw out a little and try to hold my front teeth together. Its a high frequency low amplitude "tremor". It's made worse if I tilt my head backwards and look to the ceiling. I also noticed my tongue will twitch every now and then randomly if I focus on it. If I rest it and really try to relax it, it rarely twitches and if it does its only in the center not all over (I think). I've also evaluated my body at this point, and surprisingly noticed my right side (which is my dominate side) seems smaller than my left. I've looked at pictures and to make sure I wasn't going crazy and I do notice a difference but it's most likely marginal at this point.
I've also been getting tendons popping all over my body in my feet, hands, and wrists. Sometimes I will wake up and half my hands will be numb (pinky, ring, and middle), if I stretch them out and lay my arms flat the sensation returns. It seems that they are cramping up during the night. My legs and calves also feel like they are cramping. At one point I did have hyperreflexia on my right side but that seems to have gone away. I've been trying to stretch and massage my muscles as much as I can which seems to help. I've started taking Vitamin D, Magnesium, B12, and Calcium, which may be helping but not 100% sure. My legs are restless as well, I constantly want to move them and bounce them up and down.
One thing that actually helps slow down and almost stop the fasciculations is bringing my legs in close to my body, and/or resting them in a reclined position on the couch which I feel is very odd. My head also feels better when I'm in those positions like it's not working as hard or something. I can't explain it well but it's very odd. I haven't had a day without fasciculations and when I get them they bounce all over my body from my calves, arch of my foot, lower back, bottom, torso, arms, hands, shoulders, stomach etc... If I stretch my muscles or use them that also seems to kick off the fasciculations, for example when I first wake up seems like my body hasn't had any but I stretch and boom they all kick off.
I read that benzodiazepine withdrawal can cause fasciculations, as well as a lot of the symptoms I am having, and I'm really hoping this is the case but the tongue / jaw pulses / tremor have me really concerned. I have also read there are some post viral things that can cause some of the symptoms that I have been experiencing as well.
I mentioned these new symptoms to my Neurologist who immediately ordered an EMG, but that isn't for another week. I'm trying not to lose hope but I'm in the middle of all of this right now and my mind is hyper focused on these new symptoms and I can't get reprieve. He originally diagnosed me with Benign Essential Tremor but this was prior to the fasciculations.
I have read the read before posting thread, and understand that there are nuances to everyone's experiences so I hope I don't offend anyone by posting. I've been living in a nightmare for the last few months and I want to wake up.
I appreciate all of your time reviewing these symptoms and providing feedback! I will make sure to post my EMG results after I receive them to this thread for everyone to review.
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