I pray my mistake did not lead to ALS

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DCreary

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Hello, first I am embarrassed that I am to this point that I am looking on Google for answers.

A couple of months ago I was coming off medication that I was having a bad reaction to. During that process I had insomnia. I tried everything to go to sleep but nothing worked. In January I made the mistake of taking a pill for anxiety and later that night I tried some THC oil to see if that would help me sleep (please don't judge me I was desperate to sleep and was not in my right mind). I had a terrible experience and felt like my brain was on fire and my body was overstimulated that night. I felt like I broke my brian that night. Not sure if the pill and the oil counteracted with each other. A month after that experience I started to have twitching in both arms/legs, feet, neck and back. I told my primary care doctor what happened and the symptoms I was having two months after that experience. She said that she doesn't believe I could have hurt myself that night but ordered an EMG and MRI.

I took the EMG early March and it was clean and the MRI was good also. Since I was sleeping again I thought everything would go back to normal. The symptoms unfortunately got worst. The twitching did not stop, my neck was very stiff, I feel cramping in both tights and calf. Recently I feel like it harder to swallow food. My primary care referred me to a neurologist, and the neurologist requested for me to get another EMG at the end of April.

I read the post about twitching is not the main sign but I have a couple of questions, if someone can help.

Can twitching be an initial sign of ALS?

How long should you wait after your first symptoms to get an EMG?

What is the best way to test for swallowing difficulties to see if it's related to ALS?

Thanks
 

affected

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Don't worry, that was a normal side effect of some strains of cannabis, it didn't break your brain.
You read this post, read it again. Twitching means nothing, your doctor will know when an EMG is appropriate (and they are not done too early). Your doctor can refer you for ENT studies if your clinical exam warrants it.


The best thing is to keep working with your doctors. Truly only someone examining you can really work through to a diagnosis and treatment with you but you are not reporting anything that would indicate ALS which is fantastic.
 

DCreary

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Thanks for your reply. I was worried about excitotoxicity that could lead to excessive levels of the excitatory neurotransmitter glutamate due to a high simulation caused by the anxiety medication and thc. My wife thinks I'm over analyzing my experience but it was so intense (very very intense) that I felt like my brain was on a frying pan that night (the old school commercial this is your brain on drugs). This has kept me up at night trying to figure out can someone actually give themself ALS by excitotoxicity due to drugs that overstimulate the neurotransmitter? Not trying to convince myself I have ALS but I found this interesting and scary in my situation. I pray next week my EMG goes well again and my symptoms do not lead to anything else. I can honestly say this experience has made me aware of the need for more ALS research.
 

DCreary

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I did another EMG and it showed Carpal Tunnel but the neurologist stated no ALS. When I asked why I keep twitching he basically said he does not have an answer. I will be honest and say not having an answer is frustrating, especially when there is no way to rule out ALS 100%. I keep thinking could the Carpal Tunnel be a sign of the beginning of ALS? Could I possibly have done this to myself with taking a high dose of THC oil and medication that lead to excitotoxicity and damage my neurotransmitter? How long should I go twitching before I can feel it’s just twitching and nothing else?
 

Bestfriends14

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I'm sorry you are going through such angst but please believe the doctor when he says that this is not ALS. You're not describing it at all, and in your case, this disease CAN be ruled out 100%. You have no progressive failure, therefore, there cannot be anything more obvious than that that means no ALS. That is fantastic news.

Keep in contact with your doc on what to do for your carpal tunnel. You are so very blessed to have been diagnosed with such an easily treatable issue.

Best of luck to you and take good care.
 

affected

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No, no and no. Carpal tunnel has no link whatsoever to ALS and twitching means nothing, no matter how long it goes on. People can twitch their entire life.

Please go get help for your fears. With all respect, asking terminally ill people to keep reassuring you is not appropriate.
 

DCreary

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I apologize if my line of questions comes off as looking for reassurance and I was not trying to offend anyone on this forum. I hope you can please accept my apology. I have exhausted all my options on trying to figure out what are the neurological problem I am having. My body is doing something that I am not in control of and yes that does increase my fear. This forum is the only place where people like me that don’t know what is happening to them can go hopefully looking for answers to the questions that our doctor spends 10 second providing no answer for. I understand that a doctor should be the person to address these questions with but I have learned the hard way that doctors does not know everything. I believe in talking to the people that are truly dealing with it and that’s why I am on this forum to understand, not to offend anyone.
 

Nikki J

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Look up bfs ( benign fasciculation syndrome). There are groups on facebook and reddit ( try muscle twitches too on reddit the bfs there has become a little weird). You will find lots of twitchers many of whom worry about cramps and swallow too
 

affected

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I am truly sorry you are so scared.
But go back and read this again.
It clearly states that when senior members like myself and others that have answered you here and say - this is not how ALS presents, you need to accept and move on. We do sympathise, but you don't have ALS and asking us to keep going over that with you is not what this forum is for.
So while you see this as the only place to find answers, please read again and see we have given you the answers.

I truly wish you all the best. Follow the resources Nikki has suggested and stay away from here for your own mental health.
 
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