Scared of ALS

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Cunni035

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This will be my only post in this forum so I am going to say thank you to any responses ahead of time.

About a month ago I started with some bad anxiety over the JJ vaccine and the blood clots. Of course I took the thing and got scared. A few weeks after I noticed my right lat twitching. I was like what on earth. Felt good no issue. Well of course I went down the ALS rabbit hole. This actually isn’t the first time. Back in 2018 I had some other health anxiety and went down the same ALS hole. I’ve had some friends of my dad pass from ALS so it just scares me.

In 2018 I went through the same I just went through. Blood work MRI EMG etc. all seemed normal. Felt good about it. Well damn this right lat twitch in April of 2021 sent me off again.

My GP tested my reflexes. Said I look fine and didn’t visually see anything. He sent me to a Neuro buddy anyways to see if that would help. I did the whole clinical test. Everything on the strength side seemed normal. Walk on my toes, my heels. Was able to hold my arms agaisnt them pulling. My legs. Etc. only had some slightly brisk reflexes.

Did an Nerve study and EMG. The Neruo doing the EMG is a specialist in ALS in my state I live in and sees many ALS patients. My twitches are random for the most part. My lat doesn’t do it anymore. It could be my right calf one min left calf another. Right quad left quad. Left bicep right tricep. Most of them are more like a quick pop than a twitch.

So the Neuro sticks my right leg near my shin and has me do something with me foot. Can’t remember if it was push or pull agaisnt his hand. Next was my right calf. Same thing. Has me basically flex. First two he said were normal. Next my quad. Had to push against his hand. Said it was normal. Stuck my right hand between my thumb and pointer finger. Normal. Stuck my forearm. Normal. Bicep normal and my shoulder normal.

He said he was 100% certain I do not have als. If you all here got the same results would you feel you don’t have ALS and chalk up the twitching to BFS, anxiety, sleep issues, etc? I have had two emg done in the past three years that were normal. I felt good for about 2 weeks but still some random twitching/popping feeing. I don’t feel weak. Still can workout, play golf, etc.

I’m working on my anxiety cause I know it hurts my wife and kid.
Again this will be my only post here no arguing or anything.
Thank you again.
 
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lgelb

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Yes, anyone here who has or suspects ALS would be thrilled to be living your life, because you do not have ALS. I'm glad you're working on your anxiety and you might give some thought to counseling/medication/lifestyle changes if those might help. When you're blessed with good health, it's wise not to fritter it away.

Best,
Laurie
 

Cunni035

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I felt so strange posting it cause I just can’t stop
The pops and twitching. I was for sure it would go away. Guess it’s a time thing and got to calm myself. Thanks again for your reply.
 

affected

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I think the mods could do you a true favour and close this thread. It is not appropriate to post this to the terminally ill. Twitching and pops mean NOTHING.
 

Cunni035

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Started second thread
I posted a few weeks ago but still having anxiety.

Per all my test results.
Normal strength
Normal toe and heal walking
Normal foot reflex.
Slight brisk reflex but I can’t remember if I’ve had this my whole life.
Emg was normal with great response per the Neruo who is an ALS specialist.
normal speech.
Herniated disc T-4 and T-5.

My anxiety is up due to one item. I have a bilateral Hoffman but have had some real massive panic attack for about a month and have never had that tested before in my life.

Should I be concerned? Drs don’t seem to be concerned and my PCP tested me today and said looked normal to him.

thanks.
 

Bestfriends14

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Please go seek answers from a counselor as at this stage, your anxiety is ruling your life. You don't have ALS, as per everyone who has read or heard about your symptoms. I'm terribly sorry, but the resources of the folks here are tapped out and the forum does not serve as a resource for anxiety. You said you would post one time only and you are on to your third message. I sincerely wish you all the best.

Good luck to you and take good care
 
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Clearwater AL

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Get Real
The Hoffman test has a positive predictive value of about 60%, The Babinski test
is far more predictive than the Hoffman. Having a panic attack over a single test
of all the tests needed for any diagnosis is a real indicator you need help for
Health Anxiety ASAP.
 

Cunni035

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My twitching has gotten worse since my emg. I have a lot in my feet but they didnt test my feet. They tested my shin and my calf. Also have noticed some jerks at night while falling asleep. Would the normal emg done before these worsening twitches still mean this isn’t als? My emg was done around a month ago. My feet were bothering me then but my calves and quads have gotten worse. Should I go back or chalk it up to my anxiety? My PCP says the emg would have picked it up if there was something wrong and it’s highly unlikely that over the next month a twitch in my right leg, which was tested is now from ALS.
 

Bestfriends14

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Anxiety. Please go get help for it. Remember your audience here-people who are terminally ill and you are asking them to handhold your anxiety. Doesn't seem fair or even the slightest bit kind, does it? It sure doesn't to me.
 

Nikki J

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I agree with your pcp. I have had many emgs before and after onset ( for research because I am FALS) never have they done an emg on a foot If you were twitching due to dying motor neurons the emg would have showed it. You had a normal emg and a normal clinical exam ( bilateral hoffman can be a normal variant). It is time to move on and if you can’t ask your pcp for help to deal with this
 

Cunni035

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With the twitching. Does it matter where it started? My first ones were in my right lat. moved to my bicep and shoulder then feet now quads and calves. Some in forearm hand etc. So is it if you had twitching anywhere due to dying motor Neuros an emg would pick this? My emg was only done down my right side. The Neuro, who specializes in als, said they don’t have to test both sides.
 

Nikki J

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Believe your neuro No it doesn’t matter.

i am closing this thread. Please do not start another. Also do not message P/CALS. The best and healthiest thing would be leave and block this forum and other ALS sites
 
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