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jsmith

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Learn about ALS
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Hi everyone

First of all thank you all for keeping this alive with so much info available. This forum is one of the most empathic and caring ones I’ve ever seen. My prayers go to the ones who have been diagnosed and to their caretakers.

I am apologizing for this post in advance, I know there are many users who have gone and are going through serious issues :(

I will try to write a short story about symptoms and maybe get over it if you think it’s not bad. I am writing from the phone so I might make some mistakes.

9 months ago had a dental implant, this whole year was super stressful with work and also lots of anxiety with some nasty mole i had to take out (so stressful that i had around 6 months of bruxism day and night)
Until 3-4 months ago I had zero issues until both me and wife caught a nasty bug and we have been fighting it for a few weeks. I had headaches, pressure in ears and head and a vein/muscle twitching above right ear. Went to neuro and he said it’s from the severe blockage of sinuses and pressure in head (since then I managed to trigger it easily by drinking milkshakes and creating pressure) will go to a TMJ scan for this. also since the virus one tooth started to dully ache on the upper jaw.

another thing that happened around the same 3-4 months period is that i fell asleep on the stomach with my head at 90 degrees and when i woke up had intense pain in the neck (to summarize, around 3 months ago had extreme neck pain, nasty flu and was suffering for like 6 months of extreme stress that i was clenching my teeth continuously)

probably 2 weeks into the flu like symptoms i started to get twitches here and there, mostly during the night. didnt give too much importance because i sleep on my stomach and it’s always a weird position that hurts a bit. fast forward a month and I was at an ear doc who said my ears are inflamed and got some powerful nose drops and 1.2 mg of ibuprofen per day (it was weird because after the first drops i realized my ears were so clogged and i was actually not hearing well this past few months)

Somehow, around 3 weeks ago I googled ALS and everything went crazy. I got some severe anxiety and couldnt even work. Twitches went from a few a night to whole body twitching like crazy. Had nights when I couldnt sleep because of so many twitches. I get them everywhere except eyes and tongue.

I read hundreds of posts from here and aboutbfs and when I got home i visited the only neuro who I saw had some articles about ALS.

I went there, told her everything and i did my clinical exam which I passed with zero issues.

Next day I had an EMG (those 24 hrs were pretty much the most stressful hours of my life because I knew that the EMG is very good at saying whats up).

The Nerve conducting bit was perfect and she did only three muscles with the needle (the ones with clear fasciculations visible to the naked eye). left leg, right leg and between thumb and pointing finger. She said it’s clear and that she doesnt need anything else. She said she is certain it’s not ALS or any other neuron disease. she said that like 5 times because I was shaking still. She also said that it’s not simple BFS either

I didnt have fibrillations, PSWs and the recruitment was always correct. MUAP had slightly increased duration and ampl and small polyphasicity sometimes.

She said I had an event of some sort (she thinks virus or something with lumbar/cervical) and now the body is healing from it (she saw reinervation on the EMG I think)

I was sent to do lots of tests for different viruses and see if we can catch the cause. She even sent an email stating again it’s not ALS

I am not questioning her in any way, it’s just the brain being very stupid and anxious and the twitches just dont stop and remind me all the time that something is wrong.
She is one of the best doctors I’ve ever been to, listened to me for a long time, took her time with testing etc. She was really great.

What do you think? Cant help but thinking it wasnt a clean emg (although not sure what a clean emg is exactly either).

Thank you and I wish you all a healthy 2018
 

KarenNWendyn

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Twitching is common and nonspecific. A zillion different things can cause twitching with the overwhelming majority of these things being completely harmless. With normal strength and a normal EMG, you have no reason to worry about ALS. Please trust your neurologist. She has tried to reassure you. I hope 2018 goes more smoothly for you.
 

Vincent

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PALS
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You have seen a neurologist who you like and trust. She told you 5 times you DO NOT have ALS. Now you are asking total strangers with no medical background, on the internet to diagnose you with a terminal disease. Let that sink in for a moment. What you have is anxiety. Get help with that before it ruins what could otherwise be a happy, long life.

Vincent
 

jsmith

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Dec 31, 2017
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Learn about ALS
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RO
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Bucharest
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Bucharest
Hi and Happy New Year

Thanks a lot for your replies, really appreciate this

This is like the 5th time I am trying to reply here and I really dont know what to say/write

I am getting therapy and will probably get treatment too (pills and such). Currently small doses of clonazepam to at least get some sleep

I think I was just looking for your experience in spotting if something was very weird/bad about my symptoms/results. The doctor did seem she knew her stuff but seeing I had only 3 muscles tested and that it wasnt just BFS I think I just went a bit crazy again. I am now trying to comprehend that a clean EMG means no bad stuff (like fibrillations, psw or low recruitment) and that it doesnt mean nothing at all. The doctor poked the muscles that were twitching visibly and she saw the fascics on the emg and she was not concerned with them because there was inervation (unfortunately cant remember exactly what she said)

Thank you again and God bless you all
 
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