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TomR1972

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Joined
Mar 25, 2007
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55
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PALS
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US
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Ca
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San Jose
I was referred to Stanford at my request from what is conisdered a really good neuro. He didn't feel it was als, nor does the Neruo from stanford. He feels with all my tests I've had and the symptoms that ALS isn't even in the picture. He said that they can be 99.9% but never 100.

He feels its one of the many virus's that can affect you and take a long time to recover from. He says he sees this a lot and that there shouldn't be anything to worry about.

He gave me the most comprehensive in office neuro exam to date and saw nothing at all to make him even think ALS. He said he is convinced its of a benign nature.

Also he said that in the area there is about 100 new cases diagnosed a year and that he sees probably 1/3 of them. That he is the one who gets assigned possible als patients, so to hear that he thinks I dealing with a benign virus makes my nerves one one-hundreth of a millimeter better. However I still have my doubts but I will wait and see what transpires over time.

I hope this is the end of the als thoughts for me and I hope there are others on here that will get the same diagnosis as me. I may still have this disease and only time will tell but I know I have read the most heartfelt stories on here that I will most certainly never forget. I will alway make this disease one that I contribute towards and fight for in any way possible. Let's hope the brainstorm company findes the cure they are claiming to be close to. I thank everyone for taking the time out to talk with me and make me feel better.
 

brooksea

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congrats Tom!

Hope you get better. You should celebrate over the weekend! We'll still be here if you take a turn for the worse, but it sounds like you are in the clear. :-D

Take care Tom!
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
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Louisiana
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Carencro
Tom, you need to look really hard at lyme, even though you've tested negative, you need to get specalized testing. Maybe even try a round of antibiotics to see if you react, then, get retested. It's worth a try. It's a very strong possibility, esp. with the doctor saying it's a virus. You may also want to see an infectious disease expert, you may have picked something crazy up.

Oh yeh, at least your expert knows better than to guarantee 100% or better yet 110%.


Congrats!

Rgds,

Jamie
 

Jeliota

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Jul 3, 2007
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TN
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Knoxville
Strike three. No ALS. :-D

What are you going to do with all your extra time?
 

TomR1972

Active member
Joined
Mar 25, 2007
Messages
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Reason
PALS
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US
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Ca
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San Jose
thanks

With all my extra time......I have been trying to remodel the house for years now. Slowly getting stuff done here and there. The only downfall is I still don't feel right so there isn't that much extra time! I do know that regardless I still be reading and replying on here.

Jamie not a bad idea, I need to get to an allergist cause of my throat clearing issues. Ive had that for 10 years now but it has been worse recently. I will give myself a month or two all these Dr Visits get tiring before I shoot after the lyme possibility. By then maybe I'll have more symptoms? But a disease specialist is in my future. I am glad he told me nothing is 100% but its even better to hear that he's seen many folks with symptoms like mine that are benign. Hopefully that is the case.

I want to thank everyone again! I will always be around! I am pretty around now, need to workout!
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
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Learn about ALS
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US
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New England
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Anytown
I am pretty around now, need to workout!

LOL, Tom. Congrats on the good report. Cindy
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
See. Told you so!
AL.
 
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