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Jamiet_

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Joined
Jun 24, 2009
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Friend was DX
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Louisiana
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Carencro
Well all,

I've disappeared for a long time and probably should be posting this in "stories of hope". Al, i'm sure you'll move it once you read it. Well, for starters, i couldn't get my password reset...lol Al, something's not workin right here, but i won't take it personal or hold it against u...lol..

Anyway, i missed all of you, but i've been really really busy, which in this line of business, is a good thing... I certainly have a "new" life...I'm one of the lucky ones and boy has it changed me.

Well.... My new user name is Jamiet_. My old is Jamiet, i couldn't get it reset so i added a little dash.

Well, for those of you who don't know me....i had ALS... I don't have it any more... WOW... really? really?

Before going any futher, just go reasearch my old post...(THERE ARE ALOT)


Well....in my mind i did have it....it was a living nightmare, but the peole here made my life again.....picked me up when i was down and allowed me to share my joy when i was "up". They used to call me the forum consultant (or something like that) becuase i knew so much. Now i'll admit it was too much.

Ok, so what the heck made me think i had ALS. Well, i may still have it, but i sure am alot better, we'll all never really know until they do an autopsy (let's hope we never get there right).

I had the muscle twitches (still do), i had the cramps, i had one foot get smaller than the other (still is), one arm got smaller (still is and was the first thing i noticed), i had memory loss, i have tongue grooves (bad), i had tounge twitches, my tongue is crooked when i stick it out, i had CRAMPS...BAD CRAMPS. I had some stiffness (not bad), i had it all.... I had like 15 of 18 ALS symptoms or whatever it works out to be, i had 90% or so. I was 100% certain, ready to write my own uluogy (sp.).

Well, today, people i'm much much much better....MUCH. did i get my smaller foot back or smaller arm back...not really.....do i still have twitches...YES...

So what the heck did i have? Well guys, i think it was a lethal combination of a few different things:
1) We never confirmed it, but my test were remotely positive that i had lyme disease. I did 6 months of IV antibiotics (rocephin) and i didn't thinik i was getting better. This is a possibility people and i think i had lyme disease.
2) I was ADDICTED to hydrocodone....VERY ADDICTED. I got off of them, they were at least 50% of the problem.
3) I probably had what i would call "self diagnosed ALS". I had read so much and it matched so many of the symptoms, i was just sure. Screw several top neurologist, internest and the list goes on....I KNEW BETTER.

I had 3 EMGS... 1st normal, 2nd mostly normal, 3rd (well.....maybe isaacs syndrome or something funny, but it wasn't 100% normal).

Well i'm ....ok today, AL and the rest of you, i'm so very sorry....i even feel guilty, you all offered 100% comfort. For what it's worth, you are all the best and i have a deep deep special place in my heart for you all....i was almost there.

What i did to get better was

1) the combination of the abx.....for some reason, as soon as i got off of them, poof, i was better.
2) i got OFF the hydrocodone....wow...it was like night and day once i got over the wd symptoms. I got on a medicine called Suboxone... People, if you take more than 2 or 3 lortabs or vicoden a day and you don't feel good until you take one, then you have a problem, a problem which is probably making ALS (if u have it) worse. TRUST ME! They help in the beginning, then instead of helping, they become a necessity, then they become what it takes just to be normal. Once your there, your past the point of no return. Suboxone was a life savior..
3) The single biggest thing that helped is i had a good psych. He helped me, ALOT.
4) And lastly, which i didn't want to do is i had to "get away"from it, that included this forum. Sorry AL, i loved u guys. I had to do it, i had to at least listen to my doctor and get away.

Well, i've been gone for a while, i want to be back more but work is a major part of my life. For those of you looking for a glimmor of hope, there is hope and there will be a cure soon, but listen to your doctors. I may not be 100% out of the water and do still have all the crap but it hasn't gotten worse and i'm now convinced that if it were ALS...it would be getting worse.

Well.......take care all, i just wanted to pop in and say hi, thank you and to all of you with ALS, i pray you have the strength to keep a positive attitude, help will come....there i hope. For those of you who are not diagnosed but are suspicious.....remember it's RARE, not impossible but if those around you have hope, you do too and if you are diagnosed...it's not the end of the world...i was (well amost) there.

God Bless All....

Regards,

Jamie T...
 

BethU

Extremely helpful member
Joined
May 11, 2008
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PALS
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US
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Jamie ... I'm glad you have been "cured" of your obsession with ALS, but I hope people reading this forum don't think you've been "cured" of anything else, like actual ALS.

The "symptoms" you list are NOT ALS symptoms. Grooves in the tongue could be a zillion things including reaction to drugs/meds/smoking/dry mouth; crooked tongue--no; twitching tongue ... maybe bulbar ALS, but for every ALS patient with tongue fasics there are at least a million perfectly healthy people with tongue fasics, and if you had tongue weakness--which in ALS preceeds twitching--you would have serious speech problems, too; memory loss--that's a new one, but nothing to do with ALS; general muscle twitching--if it were localized twitching in later stages of progression, OK, but not early in the disease; arms and legs of different sizes (EVERYBODY'S are different sizes); cramps--not an early symptom.

The fact that you thought you had bulbar onset and limb onset symptoms all going on at the same time is a pretty good indication that you had neither.

I'm really glad you handled your drug addiction and got some counseling. I'm sure that staying away from this forum helped a lot too.

Thanks for assuring those of us who do have ALS that it's no big deal, or as you put it, "not the end of the world." I feel better already!
 

brooksea

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Sep 27, 2006
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HM
Jamie, glad you are doing well. Nice to hear it.

To all who read his post: I only know that he was very compassionate and understanding towards others and even gave one member of the forum his "miles" so their family could go to Disney. Could have done other things I don't know, as he offered people his help all the time.

I don't think he meant to offend pALS. I think he was trying to show ALS wannabes that there are other things they could have. And I don't ever recollect him talking about being addicted to rx drugs before.

Probably took a lot for him to come back and post.
 

BethU

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Joined
May 11, 2008
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PALS
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05/2008
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US
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California
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Los Angeles
CJ ... I'm glad he is so well-liked by the forum community and was so helpful to PALS in the past. I certainly trust your judgment about his intentions.

I was taken aback by his stating gleefully that he has been "cured" of ALS. There is so much misinformation online ... including on this forum ... that I cringe when I see someone who has never been diagnosed with ALS throwing around concepts like cures, and listing bad memory, overall twitching, and different sized limbs as ALS symptoms. And stating that he had "15 of the 18 ALS symptoms." Huh? His message now goes into the great Google grab bag of really bad ALS information, and it will no doubt be quoted endlessly by worried lurkers as another reason they "know" they have ALS ... because their memory is bad! Or their tongue has grooves. Or they've taken the drugs he was strung out on.

If we can get real here, saying that getting ALS is "not the end of the world" is not really a nice thing to say to people who have this fatal disease (sorry Joel). For those of us who don't die of something else first, it will be the end of the world. Literally.

According to this message, his "symptoms" were caused by the drugs he was addicted to plus his psychological issues. If he didn't mention his addictions while he was still taking these drugs and participating in the forum, it's because that's what addicts do.

I'm really glad when any of the unnecessarly worried folk who come to this site finally are convinced they're OK and get help for their emotional problems, fears and/or addictions, but I think a post like this so full of misinformation and misdirection does much more harm than good.
 

mango

Active member
Joined
May 11, 2009
Messages
37
Reason
PALS
Diagnosis
1/2009
Country
US
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Florida
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Ft. Myers
If you've been diagnosed with "classic" ALS, the only reason to stop taking hydrocodone is if you're switching to oxycodone.

I'm practically a doctor.
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
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CA
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Alberta
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Hinton
Well said Beth! My BSometer went off the scale when I read Jamie's post. My first thought was "how can you be cured of something that you never had?" and my second thought was "how can you tell me that a diagnosis of ALS is not the end of the world?" EXCUSE ME? It could very well be the end of my world. It has already changed my life so I don't need someone with his "experience " telling me about it. He was on here before my time so I have no previous experience with him and I don't have the energy to do research on him so I only can comment on what I read on this thread. I am glad he is cured, but I'm unsure of what.

Barry
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
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10/2003
Country
CA
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On
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NW of Toronto
Hey Jamie. Glad you finally figured out how to get back to fill us in so to speak. I must have sent you a dozen emails and PM's. I guess you weren't getting any of them. Good luck with everything.

AL.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
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uk
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uk
hi jamie,boy do i remember you.
i have ofton thought of you and wondering how you are.
yes you were a bit obsessive but i do remember you were treated badly by a few people.
i was overjoyed to see your post and hear how well you are doing,its brilliant:)
i wish you all the best for the future:grin:
 

pmbenb83

Distinguished member
Joined
Aug 6, 2007
Messages
399
Diagnosis
03/2008
Country
US
State
VA
City
Stafford
Hi Jamie,
Oh my gosh, you don't know how relieved I am to hear that you are doing so much better! Woohoo! I have thought of you and your young family often.

I'm glad to hear your business is going well too. You're right with this economy, you're very lucky.

Take care!
Pam B in Va

PS - If you're ever in the DC area with your family and want the tour, please PM me. Eric would love to give you one.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Jamie T... so glad you are doing so well and don't have ALS. I appreciate your coming back to tell us the whole story. That took courage to admit your mistakes and your dependence. I am glad we were of help to you and wish you all the best in the future. I hope your post convinces others who "think" they have ALS to go get a diagnosed from a specialist.
 
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