Hello, New To Here...

[glenn gavanaugh]

I was just wondering how likely it is it for a male to get ALS between the ages of 20-30?
Not really a hard statistic, but just out of your experiences with ALS throughout the years...

I noticed weakness, muscle loss, muscle spasms ... problems with my my grip, flexibility, etc. I ignored it for a long time, now it's so apparent it can no longer be ignored. I am 23...I drink alcohol tons, and I eat tons... but aside from that, I'm relatively healthy.

But how can this strike me at so young?

And furthermore, is there evidence that younger people afflicted with this horrible disease have the potential to live longer? or is it indiscriminately progressive for all ages and sexes?

I'd hate to get diagnosed with this , drop like a fly in a year, and then eventually a major treatment is developed by like 2015.

You might wonder why I'm so concerned, well it's because I believe I do have this - at this age, with all of these problems compounded, I'm sure the EMG studies are going show something awful. 2 Doc's have already agreed on the severity of my situation. I'm coping with alcohol - lots of crying, panicing etc. But what can I do? If I'm already weak, how fast is this progressing? Prob pretty fast considering I just noticed all this stuff in August... starting with spasms and twitches now finally weakness and muscle loss...

makes you wonder about life. it's well, it's a ride anyway.

-G.G.

 

[GlenBrittle]

Hey Glen,

First , get off the booze , its depressing you.

Reading all of these forums and applying what other people have to your symptoms isnt the right thing to do. Please see a neurologist. Get those EMG's . It might just be a pinched nerve. (its what most of us hope for anyways)

Dont submit to the dark side just yet, or ever.

Glen

 

[BethU]

Glen, you don't say how much you're drinking, but if there's anything that's NOT going to help you "cope," it's booze. As GlenBrittle says, get off the stuff so doctors can see what's going on. (Do your doctors know how much you drink? That is an important factor in diagnosed any disease, but especially one involving nerves. It's rough, but be honest with your doctors. It's essential they have the whole picture)

Here's a cut-and-paste from answers.com:

Alcoholic myopathy (disorder affecting muscle tissue) can be either acute (rapid onset of symptoms) or chronic (slower onset to develop symptoms). Acute alcoholic myopathy can involve symptoms such as muscular cramps, weakness, swelling, and tenderness in affected areas of muscle. Chronic alcoholic myopathy can be painless, but is associated with weakness due to nerve atrophy.


In other words ... if you think you've got a degenerative nerve disease, boozing is like pouring gasoline on the fire. (I looked that subject up a while back because a lot of people on the BFS forum seemed to be heavy drinkers, and I was wondering if there was a connection.)

If I were you, I'd worry more about the drinking than ALS. Get that problem straightened out and then worry about what's going on with your body that you're NOT contributing to.

Good luck.

 

[glenn gavanaugh]

BethU,
Thanks for the response. Well I don't drink THAT much. Just lately, I guess. But the doc's even noticed muscle wasting, so I don't know if alcohol could cause that or contribute to it...

I don't know. This is a hard time for me.

 

[BethU]

Glenn, I know how hard it is. Most of us on this forum have had to go through the waiting, and it's hell on wheels. But do tell your doctor that you've been drinking more lately. It's important information for him to know because it can affect your body.

Get the EMG done; you are very young to have this and there are a gazillion other things that are MUCH more likely to be going on than ALS. ALS is rare, and in someone your age, the odds are all in your favor, but go through the tests and find out what it really is.

Take care.

 

[glenn gavanaugh]

thanks...

I'm feel like I'm suffocating on the inside, it's the worst period of my life, I can't even put it into words, but it's like hell on earth, if I could sum it up, I guess.

I just don't see how a pinched nerve could cause muscle wasting on two seperate limbs - a progressive weakness that is making it hard for me to squeeze things that I could have easily squeezed with ease before in my life... a weakness that I can feel all the way to my shoulder... and the fasciculations which started a while, while back and I never thought a lick of until I noticed these other problems...

I wish I knew more about different illnesses, but of course this all points right towards ALS - because of this dang internet - but there's a rebuttle for everything to assume "oh well you're reading the internet too much" or "oh well you have to stay positive even if you have ALS" etc .

I've actually vomitted from the sheer anguish this is causing me. I say that's selfish seeing as there are others who know that they have it, but are in the process of diagnoses like me. My own family doctor said it doesn't look good.

in my early 20's and I just don't want go out knowing there's no chance of treatment, let alone a cure.

this is why I drink, to subdue me into just forgetting about it all - because to face reality right now is so difficult. as my limb gets progressively weaker, how am I not left to believe it's MND? a virus, or a pinched nerve - I doubt it - there are other symptoms associated with that stuff that I clearly don't have - I don't exhibit pain, nor sickness - it's just fascic's, weakness, atrophy... bam.

 

[GlenBrittle]

Hey Glen,

Are you working ?

That's a great way to not think of what "could be".

Do your best to get the EMG's as soon as possible. Believe me , there was a weight lifted off of my shoulders when I finally found out what I had. Weird but true.

I understand your anguish .

What things bring you joy ? Go out to the movies , or even a peeler bar ... just have some fun. Do it . Do it now.

 

[glenn gavanaugh]

GlenBrittle - thanks. yes, I work, only part-time right now.
emg's are a must, I know.

I notice a lot of bone cracking in the limb that's most affected - I don't know if it's from the loss of muscle, or... but it more at the fingers, elbow, even shoudler... weird.
lifting a full pot with my one hand is just as easy with an empty one with my other hand - just things like this that are reminders until the emg's.

i hope at 23 it will be a slow progression. i guess when you have it, it's all you can hope for!

 

[Connie]

Don't rush to judgement.

Hi Glenn,

My heart goes out to you and you are in my prayers. I understand drinking to cope with your fear but I agree with others that you really would do better to not rush to judgement. Try to get your diagnostic testing ASAP and don't do anything to yourself that is going to threaten your well-being.

Panic is normal but not an effective coping mechanism long term. Spend time with family and friends and try to enjoy your life and don't anticipate the worst. You are likely to be wasting a lot of energy on negativity which is not healthy for you.

The best to you.

Connie

 

[glenn gavanaugh]

thanks Connie.

Ya it's weird I'm feeling kind of numb to it right now, like I don't care as long as I'm able to talk to my family - none of it matters to me, until I get there. I'm not going to touch a drink tonight... I'm just going to lay down with my dog and order Pineapple Express (looks like the dumb fun, something I'm in dire need of). I have a feeling this is ALS - only because of the atrophy - if it was just even profound weakness without the loss, I'd even have a lot of hope left (i was told when the fascic's first came that hey a lot there's no muscle loss... now the same doc who said that was the one to point it out... he's kind of dumbfounded I think because of my age... but like he said it's not impossible for me to have it) - so now in my mind i have to prepare for the absolute worst, hope for the best.
again all the matters to me is the communicate with my family through this - if it's even utilizing 1 finger, I don't care.

 

[glenn gavanaugh]

before i leave to go watch the movie i have a question:

have you known of people with clinical muscle loss, weakness, fascic's who came out with a clean emg? people who had trouble using a limb or even 2 limbs? and who never had bone cracking but once muscle loss occured they did? who started off noticing fascic's and a year later have all these other problems?
or have you heard more of the case it's ALS?
thanks.

 

[laurel]

Hi Glenn,
What you are experiencing could be attributed to things other than ALS. My husband has CIDP, has atrophy of his right hand (loss of thenar muscle and limited grip) and foot drop in his right foot, fasciculations. He has treatment monthly with IVIG. He was diagnosed at a neuromuscular disorder clinic with EMG, nerve conduction tests, MRI, lumbar puncture, blood tests etc. So you see there are other diseases out there other than ALS with symptoms such as you describe. I know it's hard after learning that certain symptoms could indicate ALS, but chances are high that it is not ALS. We worried terribly about ALS too so I understand what you are going through. Put yourself in the hands of a good neurologist, and in the mean time go for some long walks with your dog or swim to take your mind off your body. Good luck and keep your mind filled with positive thoughts--not negative ones.
Laurel

 

[glenn gavanaugh]

I have a question about progression:

I'm already showing signs of muscle loss in both my hand and calf - is this a sign of the classic 2-3 year mortality?
I've read that there's been studies on younger men in their 20's living longer, but they have a different varient of the disease - that is usually slow progression in their hands at first - I'm already showing signs of both hand & leg - my hand is so stiff and slow, my arm so much smaller, I fear this going to spread fast...

 

[lydia]

You need to stop.

Are you even reading the responses these kind people have posted for you?

Laurel just described her husband's symptoms, so similar to yours, and not caused by ALS and your response is to jump right back in with yet another question based on the assumption that you do indeed have ALS. "Is this a classic sign of the 2-3 year mortality?" Are you kidding? Why are you asking a question like that when you don't even have a diagnosed?

Are we just an audience for you and your paranoid outbursts?

People are trying to communicate with you...but you are not listening.

This is what they are trying to say, one more time: Many other scenarios besides ALS can cause whatever it is you have. It may be a long time before you find out what it is, if ever. No one here can diagnose you.

Go to your doctor and find out more news. Asking the same questions here over and over serves no purpose.

Lydia

 

[glenn gavanaugh]

I'm sorry, it's just seems like so long 'til I see a Neuro.
I'm just worried that when I get there I'm going to be pushed around, and rushed out. I want an EMG so badly - can I demand one on the spot? I clearly show signs of atrophy, weakness, and accompanied by fascic's (which are less sporadic than they once were - are more isolate to specific areas, and are more subtle... which is weird)...
If I go all the way to his Neuro, after waiting this long, and no tests are done, I'm going to implode.
And you have to take my age into factor - I'm not even in my mid-20's yet - the thought of putting my Mother through this is an idea that makes me want to vomit every time... I try and push it out of my head - but just imagining her face if I am diagnosed with it - when I try and flex my hand and it's so weak and the obvious muscle loss and the fascic's - it's a hard, hard thing to just forget until I see the Neuro. I keep coming here for answers which only the Neuro can give me anyway...