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Postby jblack on December 11th, 2002, 6:15 pm

I just got back from my second neuro appointment, with Dr. Miller at the Forbes ALS/MDA Research center. He said neither the EMG nor the exam suggested ALS. In his own words:

"Please understand that I am not in the business of telling people who have ALS that they do not. It would not be wise for me to say this to you if I didn't mean it. I only get to say that to 10 percent of the people I see. The other 90 percent of the people who come to this office, I have to tell them they *do* have ALS. So it gives me great joy to say this to you. I hope you will feel the same. Now go enjoy your life."

This makes me cry every time I think about it. The last few months have been extremely draining for me, but my prayers go to the other 90%. Anxiety and BFS I can tackle, and I feel strong. It was sobering to be reminded of those who really need strength. I know you're not reading this, but thanks Doc!

You may see me less around this board from now on. I've always made it a point to only post encouragement and support (rather than worries and fears) here, because that is what makes this site special and important, and that's what I got from it. I'll stop in to contribute every once in a while, but it's important that I focus my thoughts on the rest of my life right now. I hope those of you who have been such dedicated positive influences (Arron, Nole, Scott, Liz JerseyMom, Brian, Debbs, everyone else) will continue to do so. Thank you and bless you all.

jesse.
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Postby SusanSid on December 12th, 2002, 1:15 am

Jesse,
What good news and a good feeling. Enjoy your holidays and thanks for helping others.
Sue
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Postby Nole on December 12th, 2002, 10:19 am

I am so happy to hear that you got good news and was very touched to see you mention me in your post. I had a difficult time with this BFS stuff at first but I decided to turn the negative into the positive and live my life. You are on your way to getting your life back, there may be bumps in the road but remember we are here for you. Good idea to take a break from sites, even this one, I did the same for awhile and only visit now on occasion to help others because it helps me. Keep smiling, focus on the positive, and congrats on gaining control over your life. Best of luck to you.
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clarification

Postby jblack on December 12th, 2002, 11:56 am

Oh dear...I was just advised to clarify something in my post that might have scared some folks. When Dr. Miller said that 90%of the people he sees he has to tell they do have ALS, that's not to say that 90% of people with my symptoms do! Dr. Miller works at an ALS research center. He's not the kind of doctor people get to see often. He generally doesn't see patients unless another neurologist who believes they may have ALS sends them there. The first neuro I saw happened to be a friend of his and sent me there just to ease my mind. I hope that clears things up.
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Postby Arron on December 12th, 2002, 2:41 pm

jblack, I already had a couple of e-mails with the same concerns and I told them EXACTLY what you just posted, that this guy is the final word and no one except people with serious problems even get to see guy's like him. People with monor problems and benign conditions don;t get sent to top dog's like that guy, so I hop what I have said and what jblack posted sums it all up.

I also had to point-out that I thought your post, jblack, was great and I saw NO negative words or scary scenario's in it at all, and that if someone picked-it apart and found it to be negative, then they have a pretty serious anxiety problem going on that they need to get some help for.

I am glad you got the "all clear" diagnosis and I mean this in a great way when I say, I hope we never hear from you again :-) because that would mean that you don't need this place anymore and you are out living your life the way you should be! Good luck to you my friend!
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Postby Debbs on December 13th, 2002, 3:07 am

jblack, Awesome news !! Time to kick up your heels and celebrate life :D Im thrilled for ya...

Take care

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Postby tlotoxl on December 13th, 2002, 11:55 am

yeah, that's great news jesse. don't go and enjoy yourself too much, though, eh? ;)
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