Looking for alternative reasons

Status
Not open for further replies.

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.
 
Last edited by a moderator:
You are correct about withdrawals causing all kinds of issues. Go ahead with your EMG but, honestly, I think you should have a psychiatrist manage your meds. 2 mg. of Xanax is a fairly decent dose and tapering may need to be done over several months.

Also, there are new drugs to manage anxiety. Some people use antidepressants. Whatever med you're on, you should only go off under a doctor's supervision. Most benzos AND antidepressants need to be tapered off slowly.

Hope your EMG gives you peace that you don't have any motor neuron process. I don't see that at all in your post and would have no reason to suspect ALS.

Meanwhile, try exercise, meditation, lots of water, cut down on caffeine and try to keep yourself busy doing things that make you feel calm. Socialize...it will make the time pass until you're reassured by your neurologist.
 
Hi Kim,

Thank you for the encouraging words! I was able to push my EMG up sooner and I have the results which I've posted to this thread. While the report indicates I'm okay of course I'm reading some of the report not sure what to make of it. The NCS motor section, specifically on the right side, has some below normal values at the knee measurement. The right side is also where I noticed my leg was smaller, and the neurologist actually measured the difference and he said it's .5" of difference and that I was correct in thinking its smaller. I also asked him to perform the EMG on the right side but he seemed hesitant so he only did my left side and said its fine. I really don't understand that perhaps it doesn't matter? I noticed over the last week my tongue is no longer symmetrical, the right side is a little smaller visible by family members as well. I really was hoping it was only my perception. I'm thinking the neurologist saw it too because he asked to see my tongue and asked if I had any difficulty swallowing or shortness of breath and I said I did not.

I also think I'm my own worse enemy, as when I got into the appointment I started rattling off off the reasons why it wouldn't be ALS including being on beta blockers, and stopping Xanax, and anxiety instead on focusing on the symptoms that concern me the most like my legs shaking violently when I try to lift them up, or my tongue irregularities etc. It reminds me of the Christmas Story where you finally meet Santa and don't remember what you want! :/

I have an appointment later next month to follow up with this study so I'm going to ask these questions then to see what other reasons I would have these odd symptoms. Overall I think my fasciculation are decreasing and that is giving me some hope along with this study.

If anyone can provide their feedback on the report, specifically f-wave, and amp / velocity and any interpretations / ideas I would appreciate it.

I can post any follow-ups to my appointment next month for those who are interested in following or have similar symptoms and are trying to find some answers.

Thank you again for all your time!
 

Attachments

  • NCS-EMG.pdf
    344.3 KB · Views: 121
The NCS requires clinical correlation (looking at your legs/tongue and seeing them move) to interpret, which we cannot do. It may be an old injury, something new, or nothing. If you feel you did not adequately present your clinical picture, you can send a portal message. And you should also discuss what differentials if any are still on the table, that should be ruled out.

As Kim notes, tapering Xanax is its own thing and should be supervised medically. I would also ask about screening for restless leg syndrome and related disorders.

What this normal EMG is not, is ALS. So the really good news is, you don't belong here, so I'm closing this thread. All the best.
 
Status
Not open for further replies.
Back
Top