Twiztidtragedy

Twitching and the fear of "A"

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For the past 3 months i have had 24/7 twitching in both of my calves,
i also have random twitching in my arches of feet, arms, hands, back, temples, inbetween eyes, lips, tounge, etc...


i went to a neruo and he has done a bunch of testing and even a emg.
the emg was clean besides showing a few Fasiculations.


i then went back to my neruo a few days ago who i asked him to test me for UMN signs ( Clonus, Hoffsmans, Babinski ) all came back fine. and strength test all came back fine. He has checked my body for atrophy and in his reports have told me he has seen no Atrophy, Hyperflexia, Hypertonia, or brisk reflexes. But he did tell me the neruo how did my emg might have seend a positive sharp wave so they want to do a follow up emg in 4 months to see if there is any "Diesease Progression" if it happens

 

I'm 30yr old male with 3 sons and living with dibilating fear. I cry everyday holding my 1 year old praying this isn't MnD.

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7 minutes ago, Twiztidtragedy said:

For the past 3 months i have had 24/7 twitching in both of my calves,
i also have random twitching in my arches of feet, arms, hands, back, temples, inbetween eyes, lips, tounge, etc...


i went to a neruo and he has done a bunch of testing and even a emg.
the emg was clean besides showing a few Fasiculations.


i then went back to my neruo a few days ago who i asked him to test me for UMN signs ( Clonus, Hoffsmans, Babinski ) all came back fine. and strength test all came back fine. He has checked my body for atrophy and in his reports have told me he has seen no Atrophy, Hyperflexia, Hypertonia, or brisk reflexes. But he did tell me the neruo how did my emg might have seend a positive sharp wave so they want to do a follow up emg in 4 months to see if there is any "Diesease Progression" if it happens

 

I'm 30yr old male with 3 sons and living with dibilating fear. I cry everyday holding my 1 year old praying this isn't MnD.

Man I wouldn’t worry. I’m in the same boat and get my emg tomorrow but I do have brisk reflexes and weakness in finger extensors and forearm extensors. You checked out fine in all categories...

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I've had such high anxiety and panic attacks that I've had what I would called jumbled words like my brain mis pronounces words sometimes. And I keep fearing its slurred speech. And I get these cramp type feelings like the muscle is about to cramp but never does. Also tried to post my emg but its file size is too big.

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24 minutes ago, Twiztidtragedy said:

For the past 3 months i have had 24/7 twitching in both of my calves,
i also have random twitching in my arches of feet, arms, hands, back, temples, inbetween eyes, lips, tounge, etc...


i went to a neruo and he has done a bunch of testing and even a emg.
the emg was clean besides showing a few Fasiculations.


i then went back to my neruo a few days ago who i asked him to test me for UMN signs ( Clonus, Hoffsmans, Babinski ) all came back fine. and strength test all came back fine. He has checked my body for atrophy and in his reports have told me he has seen no Atrophy, Hyperflexia, Hypertonia, or brisk reflexes. But he did tell me the neruo how did my emg might have seend a positive sharp wave so they want to do a follow up emg in 4 months to see if there is any "Diesease Progression" if it happens

 

I'm 30yr old male with 3 sons and living with dibilating fear. I cry everyday holding my 1 year old praying this isn't MnD.

A clean emg is a clean emg. You have no clinical weakness, no atrophy and no failure. You are asking for more testing.. not the neuro doing more testing. You are very young...you don't have als. I know I'm not the first to tell you this. It's time to believe it and hold your one year old and live life not in fear. 

Twitching means nothing. Absolutely nothing nothing nothing. And I bet that's not the first time you heard that either. 

It's up to you now to move on from this fear..you don't have als. You have anxiety about als big big big difference. Hugs. 

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14 minutes ago, Twiztidtragedy said:

I've had such high anxiety and panic attacks that I've had what I would called jumbled words like my brain mis pronounces words sometimes. And I keep fearing its slurred speech. And I get these cramp type feelings like the muscle is about to cramp but never does. Also tried to post my emg but its file size is too big.

Als doesn't jump from one muscle group to the other like that. 

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I've read some stories that had widespread muscle twitching before a dx. That's why I'm so scared. Read a story yesterday about a man that was 27 and had 2 clean emgs and widespread fasciculations to later on his 3rd emg getting a a dx. And he had clean clinical exams too 

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Ummm I get the same. 

Especially the slurred speech thing. I have twitches. I have weakness in my hand to grab stuff. Sometimes my hands just get a little clumsy on me. I have had half face feeling numb with major twitching. I’ve cried about it. Because I can’t get seen like most of you and I think by the time I actually get seen it will be toooo late. I have kids and i feel like I’m too young for this to be happening. then this happens: I get a few days good night sleep and I’ve worked on releasing tension in my body. And I stop being hyper aware of this stuff and it ceases. 

I’m a very tense anxious person by blood, my dad is the same and he gets the same. 

 

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9 hours ago, Twiztidtragedy said:

I've read some stories that had widespread muscle twitching before a dx. That's why I'm so scared. Read a story yesterday about a man that was 27 and had 2 clean emgs and widespread fasciculations to later on his 3rd emg getting a a dx. And he had clean clinical exams too 

Part of the problem is reading these stories. You can find loads of stories about various health issues that are quite scary. People diagnosed with late stage terminal illnesses with seemingly no prior symptoms (so they say). People who went through numerous cardiac tests and still suffered a major heart attack with no prior warning signs (so they say). That information, as someone else has said recently, is not always entirely accurate.

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From what I understand, if you have a clean EMG. You are in the clear. If you have ALS, it would show there.

That's great news as far as I am concerned

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16 hours ago, Twiztidtragedy said:

I've read some stories that had widespread muscle twitching before a dx. That's why I'm so scared. Read a story yesterday about a man that was 27 and had 2 clean emgs and widespread fasciculations to later on his 3rd emg getting a a dx. And he had clean clinical exams too 

Stop reading stories online.  You do not know whether all the facts were provided and whether they were accurately relayed. 

While I do not doubt that the man you reference was diagnosed with ALS, there are a lot of logical leaps in the account.  First off, who is to say that the widespread fasciculations he experienced had anything to do with his later ALS diagnosis?  Indeed, widespread fasciculations typically point away from ALS for reasons well documented in the medical literature.  Similarly, the fact that he had 2 clean EMGs during the widespread fasciculations and later developed ALS means nothing.  Any one of us could develop ALS, cancer, or another disease at any time.  A clean EMG definitively means that there is no ALS at the time of the study, just like a PET scan can show no current presence of cancer.  That is the best that anyone can hope for, but does not guarantee the future.  At bottom, you are making a lot of assumptions about causation and relatedness that are not supported by logic.  

I'll give you another example of false logic.  It is well known that ALS affects the motor and not the sensory nerves, which is why you hear that ALS, at least in the early stages, is a disease of painless, non-sensory clinical weakness.  However, I can't tell you how many people go and dig up accounts on the Internet saying, yeah but there was this one person who had a lot of back pain or tingling or whatever, and then they were diagnosed with ALS.  But ALS patients can also suffer from other medical conditions, such as degenerative disc disease or a neuropathy.  Not all symptoms experienced necessarily relate to ALS.

Finally, even if everything about the account you reference is true, it is a TOTAL OUTLIER and very inconsistent with how ALS typically presents in the medical literature.  The odds of your presenting ALS in this way, already in itself an extremely rare disease, are very much not good :) 

Bottom line, stop finding weird, outlier stories written by sources of dubious accuracy.  No good can come of it.        

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Yeah I agree moxie thanks for the response. My Ha (Health Anxiety) is really tearing me to shreds atm. Idk how to just function anymore I pray and hope the twitching just stops everyday but haven't been blessed with that yet. The twitching is everywhere and really making me go insane with the what if and worst case scenarios. 

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Update: still twitching 24/7 in both calves ( stops when I walk, stand or flex the calves) still have random bodywide twitching. Yesterday had alot of tounge twitching witch led to me constantly checking for tounge atrophy. My forearms, thighs, archs of feet, hands, shoulder etc..  still popping off. Anxiety and stress are extremely high. I'm trying to ignore the twitches and just chill with my kids and wife but I cant. The fear and worst case scenarios. ( plus the damn twitching won't stop) I have alot of soreness and tension. I even have tension in both my cheeks on my face. Idk where this is headed but I'm not doing well at all....🤯

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Your neuro checked for atrophy so why are you? Your neuro said no als. It's time to ask yourself if I don't believe a specialist what will make me believe I don't have what I fear. Idk what we can tell you if you can't trust a specialist and an emg test? 

You are doing this to yourself. :(

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The emg you did was clean. ? All tests were fine. ? I don't think he said he is ruling out als. Sorry but no. You have zero symptoms of als. ? 

None of that adds up. 

 

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35 minutes ago, Twiztidtragedy said:

My neruo also said to come back in 4 months for a repeat emg to rule out als.

I keep trying to post my emg and conclusion but it's to big of a file

Post it where? It shouldn't be posted here anyhow, we're not qualified to interpret it. Even if we were, we wouldn't have the means to provide any sort of diagnosis. If you have continued concerns, speak to the specialist about it. We're glad to help and offer advice, but that's about all we can do.

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I have had twitchy calves for going on 24 years and counting. I never knew about ALS in the dark ages before Google, and never worried about it after the fact. I hesitate to suggest it sounds like you are projecting your fears in interpreting what your neuro said to you. And I will agree with the others, you have got to quit googling. You simply will not have peace u til you do so. 

On another HA forum I am on, there are hundreds, maybe thousands of posts like yours about people with anxiety who are worried about ALS. Not a single one has ever had ALS, but they all have anxiety. 

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Yeah google is hard for me to quit. Idk why sometimes I go 2 days without then something happens and I run to google. And panic attacks start rolling in. Even my family says they wish Googles servers would go down. How did all you stop googling what steps did you take to get there? I would love to stop dr google so any advice would be appreciated thanks

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12 minutes ago, Twiztidtragedy said:

Yeah google is hard for me to quit. Idk why sometimes I go 2 days without then something happens and I run to google. And panic attacks start rolling in. Even my family says they wish Googles servers would go down. How did all you stop googling what steps did you take to get there? I would love to stop dr google so any advice would be appreciated thanks

I have figured that out yet

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6 hours ago, Twiztidtragedy said:

Yeah google is hard for me to quit. Idk why sometimes I go 2 days without then something happens and I run to google. And panic attacks start rolling in. Even my family says they wish Googles servers would go down. How did all you stop googling what steps did you take to get there? I would love to stop dr google so any advice would be appreciated thanks

Seek help for anxiety, talk to your doc about seeing a therapist. Try therapy. If it doesn't work, talk to the therapist about seeing a psychiatrist about medication.

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3 hours ago, Twiztidtragedy said:

Woke up this morning and tounge still twitching. I'm so scared....

Me too lol but seriously it twiches. I am fine so far. You will be fine. I am obsessed too. Know that i found that lump inside my jaw it twiches like the dickens.

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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. 

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