Bad timing to come up with a good title, sorry.

[tmiller2008]

I'll be 37 years old tomorrow and this is the last place I want to be. Please don't be offended, I don't mean the company here, I'm sure. Its this place, finding out that I have almost guaranteedly (is that a word) have it. My doctor printed off sheets on ALS and handed them to me on the way out the door. That was two years ago, my lack of believing such nonsense caused me to toss it atop my books and eventually throw it out. Okay, so that was my own fault.

Two months ago I started having one issue after another and here I am! My biggest problem with this whole thing is that my youngest child, a huge momma's boy, is only 10. Tonight I have cried and cried and came searching online for something...and this support group must have been just what I was looking for because here I am.

It will be nice meeting you all, I know it.

 

[notme]

Welcome to the forum....
but...

Have you been diagnosed with ALS? We can't help you a lot unless we know what issues you are having. If you're diagnosed, you can post in the other portions of the forum with questions, etc.

If you're not diagnosed but have symptoms, here is the place to be. If your doctor just handed you ALS information--what prompted this?

What tests have you had one? There are quite a few that should be done (must be done) before an ALS diagnosis is handed out, believe me.

So--don't give up hope yet. Let's hope that it is still something else...it can only be ALS when it can't be anything else. And to be honest, if you've had 2 years with no issues--ALS isn't real likely. Most PALS are having very obvious deficiencies within two years--some are, to be blunt, already gone.

More details would help a lot.

 

[Ms. Pie]

What notme said. Where are you in regards to symptoms and testing. What is your story. We'll try to help.

 

[susanf]

Sorry about your bad time. Many of us have kids. I have an 11 year old daughter that won't leave the room without me. That's why I decided to treat each condition as it arises. It is what it is, but we do have choices.
People on this site TRULY care. If it wasn't for them the last 2 months would have been unbearable for me.
susan

 

[tmiller2008]

What prompted my doctor giving me the info was when I suggested that I might have restless leg syndrome...except in my arms also. They give me the worst crawling, burning fits and I'd have to get up, last night was one of those nights also. When I told her the meds she gave me for it did not work, she ran blood tests. When I went back in she gave me the print outs.

I did read some of the stickies and I did not have any kind of brain scan, nor was one ever ordered.

Apart from the arms and legs, I drop things at times that Im certain I have a good grip on but its like my hand just refused to work at those moments. I can't walk across a room without being out of breath and my heart beats like about double what it should. I think I should probably be on oxygen most of the time. Let's not get into my memory. Suffice it to say that my children think I've gone mad....and they may be right. lol

 

[Alyoop]

My goodness, your doctor is totally incompetent. He should never have given you ALS info with no reason, what an .,.,.,.
Your symptoms do not sound like ALS, but you should change doctors immediately. The list of tests to rule out causes other than ALS is large. You have had none of these tests.

I really feel for you. You obviously are more astute than your dr, tossing the info away. I think I would have gone to my lawyer as well!

New doctor required, go for it and best of luck.
Aly

 

[tmiller2008]

I am in a new state now so that is something I have to do. I just relocated. I think I've just been terrified to go to the doctor since I got here. I saw what this did to my grandmother and although ignorance isn't the best way to go about it, I'm just scared.

You really think it doesn't sound like als?

 

[trfogey]

You really think it doesn't sound like als?

The overwhelming majority of people diagnosed with ALS are substantially crippled two years after diagnosis, and nearly half of them are dead. Doesn't sound much like you, does it?

Definitely see a new doctor. And, since it appears that your mother may have had ALS, please note that fewer than ten percent of ALS cases are believed to have any type of genetic basis and only about half of those have been demonstrated to be hereditary. If there are no other ALS cases in the past two or three generations of your mother's family, then it is extremely unlikely that your mother's case was familial ALS. Therefore, you would be at no higher risk than anyone else in the general population to get ALS -- 1 in 50,000 chance per year.

Hope this helps. Good luck to you.

 

[tmiller2008]

Thank you all so much for your input. I will be sure to keep you updated, one way or the other. If nothing else, being here has made me question this further. I thought that was a bad thing at first, just denial. Now, I'm not so sure. Thank you bunches.