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oo1984

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Feb 18, 2014
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Learn about ALS
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FIN
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western-finland
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tku
Hello wonderfull forum! I am a 29o male. I had some throat problems last year due singing and occational shouting. On january I started notising buubling sensation and twitching on my right lower side. Twitching is almot constant. Usually in the same place but occationally few beats almost everywhere. At the same time I started noticing antrophy in my forearms/ hands and legs and feet. l thInk my voice hasnt changed much. Can still talk well, drinking liquids is fine, no choking. My legs occationally hurt, but can do 10 mile bikerides. Visit neuro once and he noticed symmetrical brisk patellar reflexes. And he said there could be muscle wasting in those areas I told. Voice and tongue looked fine in his opinion. Strength was fine. Can walk tiptoes and heels. The weird thing is that the atrophy is identical on all four limbs. Can still use all of them, occational wrist pains fex. Also have exessive salivation and throat clearing. Which was treated last year as acid reflux, got bit better after that, but came back few weeks ago, with som heartburns also. The thing that keeps me going now is Opamax 15mg, I have a huge amounts on axiety an fear. Weirdly Opamax helped with twitching on that small dose. Breathing is fine except those anxiety periods. O2 99%.

About a year ago I had an extremely painfull experience with my neck. It became so stiff that I couldnt move it at all whithout causing enormous amount of pain. Got muscle relaxant and pankillers and that got away pretty quickly. After that I had some neck/back pains during the year. Been wondering if that neck episode could have messed the nerves somehow. Or could the voice overuse started a bulbar somehow. Any thoughts? Gonna see neuro in 2 weeks, emg with other labs later. Standard blookwork/vitamins were fine, except folic acid which was very low for my age.
 
In your post you said you saw a Neuro once. Did he/she schedule another appointment or any tests such as an EMG or Nerve Conduction Test? It's a huge leap to go from one (1) Neuro exam to being worried about having ALS. If you can still ride a bike for 10 miles... the leap is even greater at this time. Relax and deal with your anxiety attacks until your next Neuro appointment if you have one scheduled.
 
The neuro I visited was a private one, so had to pay it myself, because I dont have any insurance. Next on is in the public deb. I do have neck x-ray scheduled, doubt it will help anything. Strange thing that the first neuro said that brisk reflexes point away from als?! I always thought otherwise. Maybe he was trying to comfort me, cause I told I was worried about als. No response to babinski. Which is classed as negative I think. He recommended EMG and head mri though.
 
You're one of many I think of often... no insurance. That probably contributes to your anxiety. Do the best you can keeping appointments. Do the 'Public Deb' as you call it. But most of all... try to relax and be patient. I know this is also hard but try not to devote too much time on the internet med web sites. Hang in there. (American phrase). :)
 
Had some bloodwork done. My CK was 64 and Myogl 26. I've read that doesn't necessarily mean anything but. EnMG in about a month.
 
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