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will25

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First off, I dont think i have als however i get the impression my doctors think i do.

I started feeling somewhat off off last year, then earlier this year we discovered my potassium and alt were elavated which we determined to be muscle waisting, i was then sent to see a neurologist who seemed fasinated with my reflexes for some reason, ordered an mri of neck which came back ok, and said i had to have an emg done by a different neurologist.

upon seeing the new neurologist he said my emg would likely be fine, however i asked him when we finished if it was fine, and he was just like well umm noo.. and said i had sharp positive waves in legs and spine and swelling in arms which i found out ment nerve damage.

He then went on to say i needed to visit a muscle neurologist and he would get back to me, i see this muscle neurologist sometime in december and found out its a doctor who specializes in motor neuron diseases specifically als....

i went back to see my family doctor who ordered more blood work for me and stuff because i wanted to look for other possible casues, then he actully said he didnt want to order more blood work blah blah because he thinks i have some type of neuropathy however he was not going to diagnose that ( he was hesitant to say that).

So as for my symptoms, i have breathing problems, i cough alot while eating, i get bad weakness in arms aswell as legs which varies throughout the day, its been pointed out i drag my feet alot when walking, and sometimes when walking i go to step while walking and my knee kind of like buckles due to no feeling in it i guess.

I just dont know if this sounds like als, ive had these symptoms for 2 years which i agree is gradually getting worse, however I am only 26 years old.
 

Atsugi

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Hi, Will.

You're right to note that you're pretty young for ALS. I saw a database of 1800 people with ALS, and the youngest, by far, was 27. I suppose it's possible, but it's not likely for a 26-year-old to have ALS.

In your symptoms, the breathing, coughing, and weakness which "varies throughout the day" didn't sound like ALS. I would be concerned if a muscle was 100% consistently paralyzed, limp and useless, causing you to fall down. Even then, it wouldn't have to be ALS. There are many more common things that could your problems.

Sorry to hear that you haven't got a solid diagnosis from a specialist. Very often, these things take a lot of time. You really need to have a good heart-to-heart with the ALS specialist and ask for details about your EMG. Take notes on his findings.

If I thought that I might have a terminal disease, I wouldn't take 'maybe' for an answer. Although it doesn't necessarily sound like ALS to me, you still want to chase this down for sure.

--Mike
 

will25

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thanks for the reply,i forgot to add that the nerve conduction part of the test was normal only the needle part was abnormal dont know if that means anything and the place iam being sent to is the london health sciences centre motor neuron disease floor 7, which is like a 4 hour drive. :(

and when i said varies throughout the day i ment that the symptoms are always there just some days are worse then others.

Yeah its hard not having a solid diagnosis at this age, being told you should prob not be driving etc... having a good chunck of money to go back to school with but not knowing what to do in school, eg don't really want to go to school and get a degree in something with alot of walking if i might not be walking in a year or two lol.
 

dorothyann

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Ooh, scary to be so young and have this possibility...... But keep breathing deeply and do things that make you happy and treasure every day. You l may have thousands of days left. Make good use of each one..
 

lgelb

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Will,
PSWs in themselves don't mean ALS. If your tests show both active and chronic denervation, that would be much more significant.
 

will25

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thanks for the replys, i will def let you guys know how it goes when i see the als specalist in december. i forgot to add one new symptom thats been bothering me a lot the past month or so, i was wondering if it could relate. besides coughing alot while eating/swolling problems, i had a cold like a month n half ago and besides the clogged up nose the most annoying thing was the mucus wasnt draining right, it kept pooling in my neck and id start choking on it and have a very difficult time getting rid of it. the only reason i bring this up is the cold is long gone but i still have mucus pooling in neck, its esp bad at night if i lay down and in the night il wake up cause i stopped breathing and il panic, start violently coughing trying to cear it and sometimes this happens many times during the night.
 

Atsugi

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No, Will, excessive mucus doesn't not indicate a fatal paralysis.
 
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