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Trevor

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May 19, 2009
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CA
State
Ontario
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Cambridge
hi everyone,

I haven't posted anything for awhile just to get any thoughts of ALS out of my head. I'm in rough shape and a few things have progressed that scare me.
1. I wake up 2-3 times per night and can't get back to sleep
2. My head has pressure in front and sides all the time.
3. My hands are numb during the night and wakes me up
4. My knees hurt going up and down stairs
5. My throat hurts-feels like a lump in it- but can chew and swallow
6. My arms and hands hurt in morning -get a little better during day
7. I wake up with a shortness of breath
8. tired all day
9. Neck muscles have shrunk- lots of movement in adams apple area
10. voice is hoarse
11. arms/legs skinny as well as neck
12. Left shoulder joints hurts very much
13. Face is thinner looking
14. When I lean over my chest just sags there and I'm not fat
15. Tongue has big groove on left side and feels floppy-neuro said it looked ok- he said they look at top of tongue for problems
16. Have arthritis in cerival spine
17.muscles very soft

On Feb 9 2010 had an emg. He checked muscles in left shoulder/bicep and hand and did Nerve test. Neuro said he's done 2 emgs and hasn't found anything that looks bad. I going to see if I can see a specalist to put this out of my mind for good or see what is going on.
Any input would much appreciated.
I wish I wasn't posting here again
 
Hi Trevor,

Sorry to hear about your progression. What other tests have you had done? MRIs, blood work, etc? Do you snore?

About your EMG... when I had a NCV and EMG at the Mayo Clinic, it took about two hours. The EMG went from foot to thigh and hand to bicep, plus one in my back.
 
I'm not exactly sure what kind of input you would like, Trevor.

If you're wanting to hear that about 90% of the symptoms that you have listed don't have a thing to do with ALS, then I'll say . . . that about 90% of the symptoms that you have listed don't have a thing to do with ALS.

The other 10% are symptoms that PALS have . . . but who cares . . . it doesn't mean a thing, because you have to look at the entire picture . . . AND you have had two clean EMG's . . . AND you have been told by your neuro (who evaluated you both clinically and electrophysiologically) that you don't have it.

Oh, and PLEASE don't come back and justify (one at a time) that the symptoms you have listed are ALS symptoms, because they are not. Obviously there isn't a thing we can say to you to alleviate your unjustified ALS fears . . . which again is why I'm not exactly sure what kind of input you'd like. Not a single thing that you have heard up to this point (from us or more importantly, from your neuro) has convinced you that you don't have ALS, so I'm not sure why this thread will be any different.

Go to your specialist . . . get your non-ALS diagnosis . . . and be done with this.
 
I'm with Wright! The vast majority of your symptoms are not related to ALS. The proof is in the pudding. (That expression has always bugged me - just way too cliche'.)

I think Wright once suggested to someone else that a more proper attitude to have would be to make the doctors prove to you it was ALS vice trying to prove to the doctors it is (which simply makes you look pretty silly). Let me correct that: It makes you look stupid and foolish. Been there - done that.

My input:

Your symptoms point away from ALS so, I'd erase it from your list of possible symptomatic causes.

Trust what your neurologists have told you. Why wouldn't you? Is there a reason you do not trust their report? Is there a problem with their competency? If so, what is it that brings competency into question?

Please allow me to briefly share my strategy for an upcoming neuro appointment with one who has not previously seen me. I plan to interrogate him regarding my PLS diagnosis by asking what evidence there is to support it. I'm also going to suggest this may just be a case of BFCS instead and demand a script for cramp candy.

At the end of the visit, I want to hear him say, "I'm sorry, Mr. Zaphoon, you are absolutely correct. There isn't a shroud of evidence to support the PLS conclusion previously arrived at by 2 other neurologist. I agree with your supposition of BFCS. Here is your script for your first round of cramp candy. Live well and prosper!"

I'm trusting for a better report. This, in my opinion, is a better mindset to have.
 
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Dear Trevor,
You've been given some very wise counsel by some of our most respected, senior members of the forum. I hope it gives you the peace of mind, to let this go and move forward.

peace,
Melody
 
Trevor, you haven't upset me. I understand what it is like to have something wrong and have to wait for answers. Perhaps you will wind up having a condition that is at least treatable and at best, curable.
 
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