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Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
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Learn about ALS
Country
US
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Louisiana
City
Carencro
Well everyone, it's been an amazing ride. I have truly made friends forever.

I guess everyone has read the results of my biopsy. I'm as confused as ever, but i have to accept what i'm being told.

I mean, before the biopsy, i was told by one of the top ALS spec. in the country that with 100% certainty it was not ALS. Then a normal biopsy, she and he said now 110%.

It doesn't answer the 5+ reflex rating, nor the muscle wasting, which they all saw on teh last appt, nor the tongue issues, feet shrinking issues, the constant cracking joints, facial palsy, assymatry, etc etc, but i have to look elsewhere.

I thought for sure that's (ALS) was what it was, but whatever i have mimics it, hence..possible lyme. I don't want to give any false hope to anyone and i am not riding the lyme badwagon until i see the LLMD next week. I spoke to his nurse, told her my story, and she went from making me wait 2 months to see him, to sched. me an appt. next week? Hope that means something.

I don't think it's fair for me to sit here and talk, it's not fair to the diagnosed people. I know how it felt when someone else was healthy, you are so happy for them, but at the same time, it makes you sad, as you want to be there.

I truly feel for everyone here, my life has been altered and the path from here on out will be to help every sick person i know. i ahve also spoken to my friend at the local ALS assn, i told her, i will not go away for what she did for me, that I will be volunteering my time and helping where i can, when i get to feeling better.

I will be checking in here from time to time, but i have to step away for now.

If ever, anyone needs something, my email address is [email protected]. I have researched the goonies out of myself and i will never change the fact, that i will give you the shirt off my back, so don't be afraid to keep in touch. I expect an email from most of you with your email addresses.

Lots of love to you all, you are all dear friends.

Rgds,

Jamie
 

ltr

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Feb 11, 2007
Messages
690
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Even though I am so extremely happy that you do not have als, I am so sad that our journey together is coming to a halt. I, too, don't have als, but a disease that mimics it and that's why I'm here. Not having you to write to and not having your witty, educational and sometimes humorous replies is just a very sad thought for me. I hope that you and I will never stop communicating, but especially I hope, after you get your medical treatment, you will return to us. Remember, you know so much and so many look forward to hearing from you. I wish you, your wife and your beautiful kids all the best. Hugs and kisses~Leslie
 

CindyM

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Jamie-it's kind of a bittersweet thing, isn't it? On the one hand it is good news to hear someone I like does not have ALS, but sad that you are leaving. I think that you and I and Chad (CBowman) all got started around the same time. At least your leaving means a good thing. I am so glad you do not have ALS. My best regards for a wonderful future. Cindy
 

Frizzel

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Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
Jamie's Bass

Will you cut and paste that recipe for your bass fish fillet and post it on, "From my kitchen. What's cookin in yours?' That way we'll always have a part of you with us. When we cook it up, we'll think of you.

That recipe looks soooooooo good. Looking forward to having my sister in law cook it up for us.

All the best to you and your family! Take care of yourself Jamie. Cheers!

Frizzel
 

saska

Active member
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Jan 19, 2007
Messages
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Lost a loved one
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Colorado
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Lakewood
Hey Jamie, This forum and especially this section of the forum, will not be the same without you. I also started lurking on the forum about the same time you joined, though I didn't actually join until a couple months later. I am so very thrilled that you don't have an ALS diagnosed, but like everyone else, sad that you're leaving. I understand, though. I often question why I am here and what I have to offer here, and for me the forum is a way to stay connected to Mike. So I'm glad the kind folks here don't mind indulging me :). If you ever decide to come back, YOU have SOOOO much to offer here -- your knowledge, your compassion and your humor to list a few. VERY best wishes to you, and all the best of what life has to offer! Sharon
 

puzzled36

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Feb 27, 2007
Messages
54
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Learn about ALS
Country
US
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MO
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St. Louis
Jamie - Congratulations! I'm so glad its something else. I hope you find your answers and the appropriate tx at the lyme doc. I am also positive on 3 of the 10 bands on the western blot but neg. on ELISA. My neuro blew it off, but who knows? I wouldnt be so scared if my speech wasnt getting worse. Anyway, I go back in a month and hope for similar good news.

Best of Luck,
Gina
 

vmd

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Apr 27, 2007
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idaho
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N/A
Jamie:

I will keep you in my prayers as you live your life free of ALS! You have always been willing to give your time to answer any question placed your way. It will certainly be difficult losing your expertise on these matters, but you have a family to attend to. Keep me in your prayers as I continue this difficult journey.
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
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Louisiana
City
Carencro
I'm not gonna disappear on you guys, i just have to focus my attention on figuring out whats up with me, again, the test raises more questions than answers. I know what you all are going thru and will be by your side as long as you need me.

I guess this is a good example why you don't ever ever give up, no matter what anybody tells you.

take care,

Jamei
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hey buddy. You can't leave. I'm starting to get slow with the answers and typing. You know too much to leave now. I know in a way that you'd like to close this chapter in the book but as you said yourself you've got a lot of knowledge and I don't think it says anywhere here that you have to have ALS to be here. Any one seeking or "with" knowledge is welcome.
AL.
 

ltr

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690
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US
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Thank you Al, so much for saying what needs to be said! We all need Jamie. ~Leslie
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
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Learn about ALS
Country
US
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Louisiana
City
Carencro
http://www.neuro.wustl.edu/NEUROMUSCULAR/pathol/angular.htm

I just looked at this site. The doctor spent about 10 mintues going over my results with me, showing me the stains. They looked normal, and i just researched the site above, an i see what she was talking about. ti is interesting, mine looked nothing like this, nothing. She even went so far as going over all the "pink" and black and white stains, none of them looked like the denervation in this picture. As a matter of fact, the muscle fibers all looked the same as the big ones in the picture.

On another note, i'm not leaving totally, i will be back, just not as much until i can get moving forward a little. I've just gotta get my head focused here, out of the ALs thing, or i will be right back into believing i have it again and trust me, i'm fighting looking at my legs, feet, face tongue and no answers. Once i can get a little ahead of waht the heck is up with me, ALS will have a 100% fighter that will carry on the story.

As a matter of fact, i can't leave you guys, you ahve become too good of friends.

Tc yall

Jamie
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
As John Wayne once said. " A man's gotta do what a man's gotta do" Take your time pal and relish the new freedom for a while. We'll still be here.
AL.
 

seanmucci

Member
Joined
Mar 5, 2007
Messages
17
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Ill
City
Chicago
Jamiet said:
Well everyone, it's been an amazing ride. I have truly made friends forever.

I guess everyone has read the results of my biopsy. I'm as confused as ever, but i have to accept what i'm being told.

I mean, before the biopsy, i was told by one of the top ALS spec. in the country that with 100% certainty it was not ALS. Then a normal biopsy, she and he said now 110%.

It doesn't answer the 5+ reflex rating, nor the muscle wasting, which they all saw on teh last appt, nor the tongue issues, feet shrinking issues, the constant cracking joints, facial palsy, assymatry, etc etc, but i have to look elsewhere.

I thought for sure that's (ALS) was what it was, but whatever i have mimics it, hence..possible lyme. I don't want to give any false hope to anyone and i am not riding the lyme badwagon until i see the LLMD next week. I spoke to his nurse, told her my story, and she went from making me wait 2 months to see him, to sched. me an appt. next week? Hope that means something.

I don't think it's fair for me to sit here and talk, it's not fair to the diagnosed people. I know how it felt when someone else was healthy, you are so happy for them, but at the same time, it makes you sad, as you want to be there.

I truly feel for everyone here, my life has been altered and the path from here on out will be to help every sick person i know. i ahve also spoken to my friend at the local ALS assn, i told her, i will not go away for what she did for me, that I will be volunteering my time and helping where i can, when i get to feeling better.

I will be checking in here from time to time, but i have to step away for now.

If ever, anyone needs something, my email address is [email protected]. I have researched the goonies out of myself and i will never change the fact, that i will give you the shirt off my back, so don't be afraid to keep in touch. I expect an email from most of you with your email addresses.

Lots of love to you all, you are all dear friends.

Rgds,

Jamie
PLEASE STAY IN CONTACT WITH US YOUR SUPPORT IS NEEDED BY YOUR ATTITUDE AND COMPASSION YOU QUALIFY AS A POSSIBLE CARE GIVER.
 
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