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Brook

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Hi, I'm Brook.

I didn't know where else to post this. I'm not really asking if I have ALS. I am introducing myself and venting my fears to a group of compassionate people. I read all the stickies and apologize in advance if I'm too verbose.

First off, I have been lurking on this site for several years. I know many people post in this section to discuss fears of strange symptoms after a google search. Within a few posts the thread is closed and they don't come back to the forum unless they get a positive diagnosis. A lot of the first posts read like people are fishing for sympathy to support their hypochondria. I hope my first post doesn't read that way...

About me:

I'm 41, male, very fit. I was a flight medic for a spell, so I have medical training. I have several known ALS risk factors and symptoms.

I am a veteran (USN, 1995-2000). Two combat tours in the Gulf. I had the entire anthrax vaccine series, the lot in my record shows the entire sequence was from Lot FAV020, the scary one.

I have been an extreme athlete my entire life. Mostly, I was a serious Himalayan and big wall climber, ultra marathoner and long distance mountain bike racer - I pushed my body to the farthest extremes humanly possible and I often wonder if that is causing my issues. I've backed off in the last six months due to chronic fatigue.

ALS on both sides of my family. My grandmother's twin died of ALS. My cousin is living with ALS, she's only a few years older than me. I also have sudden onset Type 1 Diabetes, diagnosed at age 38.


Regarding how I feel:

Balance is shot. I walk like a drunkard or a sailor that just stepped on dry land after a few months at sea. I zig zag and bop back and forth when I walk because my balance pulls me that way. I randomly loose my balance just standing normally, such as standing at the kitchen sink doing the dishes. I don't drink alcohol or do drugs. But people have been asking if I've been drinking lately. That bothers me.

I've been ignoring fasciculations and weakness in my legs and arms for over two years. They are too constant to blame on my lifestyle, or ignore anymore. Now, they occur in my back and abs as well. In a nut shell, I feel jittery from the moment I wake up.

My left leg is weak and I can't flex either calf properly anymore. The lower left leg is rather stiff in the muscles, the flexibility in my ankle is fine, I just can't push off or raise my foot all the way. The strength just isn't there to make it happen correctly. The neutral position of my foot is about 1.5" lower than normal and I trip a lot. Hasn't changed for weeks.

I have pronounced atrophy in both hands and my thumb grip strength is seriously diminished in the left hand. My fingers cramp and curl when I do anything physical. Lately, it is uncomfortable doing simple things like holding the steering wheel, writing and eating because I loose my dexterity and/or cramp up after a minute or two.

My legs start into spasms and fasciculate terribly when I walk more than 20-30 yards. I often have to stop or sit down until they stop shaking so I can walk without people seeing me flail about like a weirdo.

My tongue acts up sometimes. It quivers uncontrollably and the outer edges have lost their tone and just shake like a water balloon. I am so conscious of my speech that I have turned rather quiet to avoid embarrassing myself. I stopped eating around non-family a while back.

I'm always fatigued so intensely that I don't even want to walk across the house, let alone try to work. I'm always drained, no matter what.

I'm still waiting for more testing.

I need to get the ball rolling with the VA, but the whole system and my depression over the symptoms have me basically paralyzed emotionally.

I'm in the freaking out and acceptance phase, regardless if it turns out to be ALS or not. Whatever I have is here to stay, I know that much.

Sending peace and love to all of you...
BJ
 

GregK

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If you have indeed read the Sticky, you know that most of your symptoms have nothing to do with ALS.

You've stated you're not here for a diagnosis, and in light of my above comment: What's your question? =:-/


EDIT: The VA won't do squat until you have an actual diagnosis, from an actual Doctor.
 

Brook

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I don't have a question. It was my way of introducing myself. I shouldn't have posted anything yet, so the moderators can close this thread.
 

Bestfriends14

Very helpful member
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Hi there,

When is your neuro appointment for an EMG? With someone who is a neuromuscular/ALS specialist?
 

GregK

Moderator emeritus
Joined
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Reason
PALS
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Mod note: Closing, per OP

Lad, until you get a Dx of ALS, you remain a Guest and not a Member.
 
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