Do I have ALS? Please help me. I am desperate.

[olly]

:lol::lol::lol::lol::lolh al,that was sooooo funny..........i nearly wet myself laughing.

kim, you maybe an experiment and a bit cuckoo but i luvs you sooooo much;-):-D

 

[Zaphoon]

Thank you, Caroline!

Not to defend my earlier posting on this thread but when someone writes telling us they are "convinced" the have ALS despite professional medical opinion to support such, I tend to just want to throw in the towel and agree.

Ted, you are a better man.

Judy Garland - Have Yourself A Merry Little Christmas - YouTube

Apologies, everyone!

 

[TedH5]

Zaphoon, I agree with you, with some people it is wise to just throw in the towl and agree with them, such as our friend with the twitching "man boobs" among others! I just thought that if a Dr actually mentioned ALS to her, warranted or not, then it would explain her anxiety and state of mind!

 

[hjlindley]

Get that neurologist to give you a better answer! IT took them almost 4 years to diagnose me becuase they were really thorough. I am being treated at a teaching hospital with and ALS clinic and they really know their stuff. It has taken 4 years fro my right hand to wekane, and my left hand beginning to. Don't panic...remember that ALS is rare. Only a good physicians can answer your questions, and panic will not help.

 

[Kool Buddee]

I could barely stand at church yesterday because of my weak legs. Anyways, I've been reading various anecdotal/personal experience posts from PALS which makes me conclude that this disease is even more ambiguous. It took 6 years for one person to get diagnosed because their EMG's and NVC was normal all the repetitive times that they have taken it. Another person is telling me that the EMG reads that you have ALS quickly and will always tell you if you have ALS. My Neuro is telling me to wait it out to see if it gets any worse. Everyone's progression rate is always different as well and it's not just contained from 3-5 years.

Although my opinion is that this disease isn't thatttt rare. Worldwide, 1 in 100,000 people get it. I could and could not have ALS, and even the doctor doesn't know. One person with ALS said she was misdiagnosed as having it and then not having it. I cannot believe they having nothing on this disease... no origin, no cure, no definite progression rate, no better diagnosis, treatment (a drug that increases your lifeline by about 2-3 months maybe). People's wheelchairs take forever to come in too.

If only there was more funding for this, there would be a cure or better treatment and options. Maybe that's why the so called "hysterical" people come on here because they know it's so ambiguous. They know that even if the doctor tells them that everything is normal, they read those personal accounts from others saying that it took them 6 years to get a diagnosis and think it might be them because their symptoms are not going away.

Right now I have an open mind, it could be various things that is causing my muscle cramps and weakness, but ALS is still an option. I do not know if there is any disease out there that is as financially neglected as this one. There probably is, but this one is up there. And the PALS that have taken the time to kindly reply to me, thank you so much for your time and words, it really changes my mindset.

 

[Kool Buddee]

hjlindley.. how did they diagnose you?

 

[Kool Buddee]

Wright, how do symptoms progress? It would be great if you'd tell me what you know.

 

[Kool Buddee]

TedH5, the doctor told me to wait it out until it becomes worse and come back. I'm just getting weakness and cramping in both of my legs. And my forearms as well. There's tightness too. My neighbor was diagnosed 2 years ago, she's doing fine right now, her right hand is gone but that's it. She was diagnosed at 35 years old. She said she started out similar to me and said it's not impossible for me to have it. How did you get diagnosed?

 

[Kool Buddee]

And thank you Ted for being so kind. I'm not easily offended by those "other people" who make fun of me. My goal right now is to get a diagnosis from my doctor and know others' personal experiences. That's all. I just block out the others who make fun of me. I'm not really argumentative and never have been. Although I am depressed about this, and sometimes unable to function, I'm still goal oriented. Haven't lost sight of trying to find a diagnosis from my doctor. I'm not emotional either, I'm like a wall. But when it comes to health and family, I get extremely emotional. I've calmed down a bit and started to think clearly. It's going to take time and money to get this settled. But it will come into play.

 

[trfogey]

Consider the fact that you are asking for some very personal information that we might prefer not to have spread all across the Internet just to satisfy your idle curiousity. In short, you are being nosy and lazy, wanting us to spoonfeed your obsession with ALS progression. How would you feel if everyone here asked you for the details of your sex life every time you made a post here ?

 

[Kool Buddee]

Whoever is willing to tell me their experience then... thank you in advance

 

[HelenL]

Kool Buddee, don't take it personally when people go off on a joke tangent, it's just sometimes that humor is the best medicine here... and these guys are the best... it's really not about you per se, more than the constant barrage of questions from lots of people. Be thankful that they are here to answer your initial questions, and please read other threads before asking for our private info. I "lurked" on this forum for nearly 9 months while I was in denial of my ALS diagnosis, as I totally thought it was something, anything else... you know if I was told it wasn't ALS, I wouldn't have been on this forum at all, but would be looking for my answers somewhere else.

Happy new year everyone!

 

[wright]

Kool Buddee

Typically it starts in a very defined area of the body (almost always in distal parts of the body . . . meaning . . . far ends of the body such as the hand or foot) and then spreads proximally . . . meaning . . . towards the trunk of the body. Then it spreads to other parts of the body, and by the time that is happening, the intial affected area is nearly paralyzed. It also happens very slowly and insidiously, to the point you don't really notice it is happening.

Does that sound like your story? I'll answer that for you: NO . . . IT DOES NOT!

The stories you mentioned (the ones you feel lend merit to your ALS fears) have absolutely nothing to do with your story. A diagnosis that is 6 years in the making is one that always had definitive symptoms and ALS was at the very least suspected because of obvious symptoms or PLS was the diagnosis that morphed into ALS. Does that sound like you? I'll answer that for you, too: NO . . . IT DOES NOT!

You are barking-up the wrong tree when it comes to whatever it is that is ailing you . . . trust me.


P.S. Still waiting for you to post the results of your EMG

 

[Ms. Pie]

Pass the popcorn please.

 

[brooksea]

Wait...I was watching a TV show on another thread, now a movie... WOW! Need to go to the concession stand...