Twiztidtragedy

Twitching and the fear of "A"

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11 minutes ago, Twiztidtragedy said:

Yeah but mine is when my tounge is in my mouth. Not sticking it out. Also I have widespread bodywide fasciculations. Look at ththe video above I recorded it yesterday. 

Talk to your doc. But it sounds like you've basically been cleared. If so, seek help for anxiety.

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6 minutes ago, Twiztidtragedy said:

 

Here's the calves just recorded. 24/7 calves

A lot of people twitch. It doesn't mean als. Plus your have passed all your tests. I hear your child in the video? Please be careful, children pick up on anxiety. To be very blunt, you need help asap, you need to seek a therapist like binn has said a few times. You don't trust your Dr and you are taking zero advice from anyone. Idk what we can do for you. For yourself and your family I hope you get help and move on from this. 

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Yes I have looked into therapy I'm calling a place tomorrow to see about cbt and or just regular therapy. As for the trusting dr. I trust my dr I just haven't been told its benign and I have to wait until March 4th for a 2nd emg to see if anything happens for the neruo to say its benign. That is why I'm scared I'm afraid that my 2nd emg with have abnormalities and I'll get something besides benign. So the fear is debilitating and ruining my life.

I also went to the er last night for my tounge all they did was a blood test for electrolytes and I had the dr check my reflexes and he said bloodwork was perfect and I had no abnormal reflexes like hyperflexia etc.. so all he said was call your neruo if your tounge keeps going but he said the tounge twitch was diffrent then ones he's seen cause he said mine was " isolated" that it disint move the whole tounge or a big part of the tounge. So the er dr just said he was intrigued by it and sent me on my way.

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Anxiety can and does all of this. Even 24/7. The more anxious you get about it, the more likely it is your symptoms will persist. Get the help for anxiety, it is the kne thing you absolutely can confirm you do have, so make sure it is treated. 

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Yes I'm calling a place tomorrow for cbt therapy or just regular therapy. But hoping they have cbt cause I need to learn to retrain my thinking. Thank you all for the advice and opinions. 

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6 hours ago, Twiztidtragedy said:

Yes I have looked into therapy I'm calling a place tomorrow to see about cbt and or just regular therapy. As for the trusting dr. I trust my dr I just haven't been told its benign and I have to wait until March 4th for a 2nd emg to see if anything happens for the neruo to say its benign. That is why I'm scared I'm afraid that my 2nd emg with have abnormalities and I'll get something besides benign. So the fear is debilitating and ruining my life.

I also went to the er last night for my tounge all they did was a blood test for electrolytes and I had the dr check my reflexes and he said bloodwork was perfect and I had no abnormal reflexes like hyperflexia etc.. so all he said was call your neruo if your tounge keeps going but he said the tounge twitch was diffrent then ones he's seen cause he said mine was " isolated" that it disint move the whole tounge or a big part of the tounge. So the er dr just said he was intrigued by it and sent me on my way.

I still think therapy is the best thing you can do for yourself. I'm not sure where you are located. (I'm in the states) but can you see a different neuro? You have no symptoms of als and you passed every test. So I'm not understanding the second emg . It makes no sense. Or maybe go to your primary and let them know what the neuro said. I went to a neuro and passed all the strength and reflex testing but he wanted to do an emg..I went back to my primary and she was pretty upset that he wanted to do it. She requested his notes from our visit and said he was either doing the test for me... to give me peace of mind or Bec he gets paid big bucks for the test. Unfortunately that's a lot of the cases. I didn't do the emg. That was almost two yrs ago. 

 

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I honestly think its CYA (Cover Your Ass) medicine. He wants to make double sure its benign and probably wants more money. Cause I have my emg results the full office report of his notes and everything and nothing says "A" on it at all. It says he's leaning towards Neruomytonia (issasics Syndrome) or Bfs (Benign Fasciculations Syndrome) and his notes even state I'm a hypochondriac and have high anxiety. So I think he wants more money cause I'm a hypochondriac and or he is just CYA Medicine. Either way clean emg and his notes point to other dx that's not "A" so who knows. But the emg conclusion says normal emg so chances of mnd are low however a repeat emg study needs to be done in 4 months to see disease progression " if it happens" and it's that last line that scares me. Cause they say I'm good but also say nothing is 100% in medicine. So I'm stuck with the what ifs until March.

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8 hours ago, Twiztidtragedy said:

Yes I have looked into therapy I'm calling a place tomorrow to see about cbt and or just regular therapy. As for the trusting dr. I trust my dr I just haven't been told its benign and I have to wait until March 4th for a 2nd emg to see if anything happens for the neruo to say its benign. That is why I'm scared I'm afraid that my 2nd emg with have abnormalities and I'll get something besides benign. So the fear is debilitating and ruining my life.

I also went to the er last night for my tounge all they did was a blood test for electrolytes and I had the dr check my reflexes and he said bloodwork was perfect and I had no abnormal reflexes like hyperflexia etc.. so all he said was call your neruo if your tounge keeps going but he said the tounge twitch was diffrent then ones he's seen cause he said mine was " isolated" that it disint move the whole tounge or a big part of the tounge. So the er dr just said he was intrigued by it and sent me on my way.

The emergency room isn't supposed to check if you have ALS or any other disease, really. Last time I went, with what turned out to be a severe panic attack, they explained to me that "we can't really diagnose much of anything, we are only here to make sure that whatever you're going through is not going to kill you if we discharge you." Holls is spot on, IMO.

2 hours ago, Twiztidtragedy said:

I honestly think its CYA (Cover Your Ass) medicine. He wants to make double sure its benign and probably wants more money. Cause I have my emg results the full office report of his notes and everything and nothing says "A" on it at all. It says he's leaning towards Neruomytonia (issasics Syndrome) or Bfs (Benign Fasciculations Syndrome) and his notes even state I'm a hypochondriac and have high anxiety. So I think he wants more money cause I'm a hypochondriac and or he is just CYA Medicine. Either way clean emg and his notes point to other dx that's not "A" so who knows. But the emg conclusion says normal emg so chances of mnd are low however a repeat emg study needs to be done in 4 months to see disease progression " if it happens" and it's that last line that scares me. Cause they say I'm good but also say nothing is 100% in medicine. So I'm stuck with the what ifs until March.

What scares you about the last line? Is it the choice of words? That's just standard verbiage for the provider / specialty. You're right that nothing is 100% in medicine; 100% is simply not possible. Is it CYA medicine? Most likely! Is it the doc wanting more money "because you're a hypochondriac"? Well, just like medicine I can't be 100%, but I seriously doubt it. Part of it may be CYA, the other part may be the specialist attempting to put your mind at ease by having a follow-up, so you can see that "nothing has progressed or worsened."

Either way, get some help for the real issue, which is anxiety. Don't do this to yourself, or your family. Trust me, I've been there (debilitating anxiety), and it's not fun nor is it healthy. Push as hard as you can to get into therapy sooner rather than later. IMO, your anxiety is the only thing that need urgent attention.

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3 hours ago, Twiztidtragedy said:

I honestly think its CYA (Cover Your Ass) medicine. He wants to make double sure its benign and probably wants more money. Cause I have my emg results the full office report of his notes and everything and nothing says "A" on it at all. It says he's leaning towards Neruomytonia (issasics Syndrome) or Bfs (Benign Fasciculations Syndrome) and his notes even state I'm a hypochondriac and have high anxiety. So I think he wants more money cause I'm a hypochondriac and or he is just CYA Medicine. Either way clean emg and his notes point to other dx that's not "A" so who knows. But the emg conclusion says normal emg so chances of mnd are low however a repeat emg study needs to be done in 4 months to see disease progression " if it happens" and it's that last line that scares me. Cause they say I'm good but also say nothing is 100% in medicine. So I'm stuck with the what ifs until March.

You rationalized really well in that post. I think the follow up emg is more to appease you then to diagnose anything. I hate that the neuro did that especially since he is aware of your anxiety. I wish they understand what 4months of waiting can do to us. :( my neuro was well aware of my anxiety Bec I told him... He didn't seem to care one bit. Some people get awesome neuros that don't bullshit.. some get the ones that want to test test test. And don't give a crap about anxiety. 

can you take your emg results to your gp and get their advice on it? Like I said my gp was not happy and even told me.. if I were you I wouldn't do the emg. 

as far as the e.r. he tested reflexes and all was good.. I would take that as another test passed with flying colors. 

 

 

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Yeah I was happy that I didn't have any brisk or hyperactive reflexes. I even told the er dr it was a fear of mine cause its associated with "A". And he said well all your reflexes look great which brought me some calm for a few mins. And honestly I think I would be in a better place mentally if my tounge wasn't twitching. I was doing fine ignoring the body twitching until my tounge started then my anxiety and panic and stress went through the roof. I've also called the place about therapy and according to them I have to speak with there main supervisor or head of w.e. to get seen there so atm just waiting on a call back... -ugh- the stress and anxiety and fear of the unknown is taking its toll on my mind body and soul that's for sure. Hope all is well with everyone else. 

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So there therapist are booked atm and they said I could either wait until one has a open appointment which could be weeks or months. Or I could see a counselor until a therapist opens up. So I said I would see the counselor until the appointments open up. So next Tuesday I'll be seeing a counselor. It's the best I can do atm. 😕

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38 minutes ago, Twiztidtragedy said:

So there therapist are booked atm and they said I could either wait until one has a open appointment which could be weeks or months. Or I could see a counselor until a therapist opens up. So I said I would see the counselor until the appointments open up. So next Tuesday I'll be seeing a counselor. It's the best I can do atm. 😕

Good for you taking that opportunity. You didn't pass it up.

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Let me ask y'alls opinion on something bothering me atm. Would you say that constant twitching like my calves that dont stop unless I walk, stand, or flex/use the muscle is more of a sign of a malignant cause than the random bodywide twitching? Or is it the same as the come and go twitches? Cause I've read bfs and "A" things and all of it is contradicting. Hotspots can last for days,weeks,months, or even years. But then neurologist "claim" constant persistent fasciculations are more " dangerous"? Seems confusing to me.

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1 hour ago, Twiztidtragedy said:

Let me ask y'alls opinion on something bothering me atm. Would you say that constant twitching like my calves that dont stop unless I walk, stand, or flex/use the muscle is more of a sign of a malignant cause than the random bodywide twitching? Or is it the same as the come and go twitches? Cause I've read bfs and "A" things and all of it is contradicting. Hotspots can last for days,weeks,months, or even years. But then neurologist "claim" constant persistent fasciculations are more " dangerous"? Seems confusing to me.

No one here can really answer that. These are follow-up questions that would be perfect for you to ask your doctor or neurologist.

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1 hour ago, Twiztidtragedy said:

Let me ask y'alls opinion on something bothering me atm. Would you say that constant twitching like my calves that dont stop unless I walk, stand, or flex/use the muscle is more of a sign of a malignant cause than the random bodywide twitching? Or is it the same as the come and go twitches? Cause I've read bfs and "A" things and all of it is contradicting. Hotspots can last for days,weeks,months, or even years. But then neurologist "claim" constant persistent fasciculations are more " dangerous"? Seems confusing to me.

What neurologist? Twitches will not cause damage or harm you. 

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Just now, Twiztidtragedy said:

Not that they cause harm or damage that a persistent or constant twitch is more concerning than random twitches.

No. Twitches are after muscle loss period. 

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Yeah I've had my wife measure my feet, calves, thighs, forearms, biceps etc since 2 weeks in also check my feet,hands, and tounge for atrophy and so far no change in measurements and from the neruo test we have seen to test for atrophy all looks fine and I'm almost 4 months in. Except atm I've had really bad burning in my mouth and a metal taste like I sucked on a nickle or penny. Throat feels sore as well atm. All after the tounge twitches.. and thank you @Holls for your input and wisdom on my situation. I very much appreciate it. You too @bin_tenn.

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https://youtu.be/mjI-sWdybtA

I am doing horrible all day and I mean all day my tounge on the tip underneath has been twitching like this.  It looks like someone is pushing a invisible pencil into my tounge. My tounge burns and then I have a buzz in it and then it does this twitch. It is scaring the hell out of me. Has anyone else experienced this? Is this just stress and anxiety. @Holls I need your wisdom.... still twitching widespread bodywide. But having alot of buzzing in my left leg today aswell. Idk what is going on 😕

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@Twiztidtragedy 

can you swallow without choking? Has anyone told you, “you sound drunk.”

if not then you’re good. Twitching is nothing, doesn’t matter if it’s wide spread or to a single hot spot. As long as their no failure then your ok.

 If you can still walk, squat, raise your arms up, touch all your fingers with your thump, walk on your tip toes, heels. You’re good. Remember we all have our dominant side also. 

A is not a muscle disease it’s a Nerve disease. Atrophy doesn’t set it until the nerve is completely dead (which means you can’t do anything with that limb, everything feels fine it just means it FAILS to do normal things.) 

burning, numbing, etc points away from A. 

 

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