Jamiet_
New member
- Joined
- Jun 24, 2009
- Messages
- 2
- Reason
- Friend was DX
- Country
- US
- State
- Louisiana
- City
- 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...
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...