wanted to share another email

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wanted to share another email

Postby Brian_B on October 26th, 2003, 1:08 am

email between me and my neurologist friend

to make it easy to read I will say what I said and what he said

I said,

> well
since you commented on neurontin and ALS, have
> you ever seen, or heard
> of anyone presenting with twitches alone that had
> ALS? like no weakness, no
> altered reflexes, normal EMG showing no
> de-nervation(however that spelled)?

he said,
Absolutely none.

I said,
and no Im not worried about it just wondered
> I know to have ALS after 2 years with no other
> symptoms would rank you as
> the unluckiest person in the world
> this month is 2 years since noticed twitches, I
> remember cause it was close
> to halloween when I noticed them but I didnt go to
> neurologist till feb of
> next year

he said,
I also delayed evaluation in a form of denial.

I said,
> I guess I didnt wanna go cause I didnt want an ALS
> death sentence before
> christmas
> restrospect I shouldve gone in oct 2001 when I
> noticed them, wouldve saved
> me months of worrying over the holidays

he said,
True. I did the same bloody thing. But I also wanted
to watch it for a while to notice any weakness or
early atrophy. I even tried to check my own reflexes
which unfortunately have been somewhat hyperactive
since childhood.

I said,
> how long after you noticed them you got EMG?

he said,
too noticed them a few days after Samhain (the
Celtic New Year, 1 November) but I waited until March
to get a colleague to do a total body EMG. And then I
made an appointment to see a neuromuscular specialist
who did a complete exam and made the diagnosis of BFS
in May. And nothing has changed since then. There is
no hint of atrophy anywhere.

"The only thing necessary for evil to triumph is for good men to do nothing"
Edmund Burke
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Selfless giver of time
Posts: 229
Joined: October 11th, 2002, 9:02 pm
Location: Southern Illinois

wanted to share another email



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