New to the "club" - Amyotrophic Lateral Sclerosis (ALS) Message Board

x-nitemops · 09-01-2002, 12:13 AM

Hello everyone. I'm a 38 yr old male and I was diagnosed on 8/28/02 with motor neuron degeneration. My doc said that it's both upper and lower. My twitching has slowed some, but gotten bigger all at the same time. Bigger in the way I twitch. Full quadrant or limb twitches. Seems like all the muscles "fire" at the same time, in what ever limb or part of the body. My muscle cramps have grown terribly in the last several months also. Now I'm really having balance issues and stumbling and staggering. It eases up somedays and is terrible others.
Question, what is the state of those with ALS at one year after first noticing the first diffuclty? How about the rate of progression?
Thank you for your time and anything you can add to help me would be apprieciated.

sunnygal · 09-01-2002, 06:17 PM

Hi. My neuro does not think I have ALS or MND, but I feel it is still a possibility. How long did you have symptoms before diagnosis? Have you had 1 EMG or more?

[This message has been edited by moderator2 (edited 10-25-2002).]

x-nitemops · 09-02-2002, 08:36 AM

I had my first motor difficulty issues in Oct 2001. They have progressed over the months. I have studied the symptoms themselves, and in early Dec came up with either ALS or Gulfwar syndrome. I'd never served my country or close to anyone else affected by that.
I have yet to get a EMG but I hope to. I want to know. My doctor, I don't really know what made him come up with that diagnosis, maybe just months of various test and ruling out this and that. Thank you for your responce. God Bless

x-nitemops · 09-09-2002, 01:05 AM

What I need to know is, what is the progression for 1 year after noticing the first symptoms. My motor control in my rt hand is impaired, I'm now staggering and stammering around. The muscle cramps have increased to a unbelievable level and the twitches although are not as frequent are bigger in movement.(they are not small little twitches, now they involve whole major muscle groups. All seem to "fire" at once)
I do not want to cloud the issue, but my wife has had the very same symptoms as me. Hers are not as acute as mine, but we are very worried.

heavenlygurl1 · 09-16-2002, 05:58 PM

Two years ago my sister was diagnosed with ALS (Lou Gherigs) and died last year on my father's birthday at the age of 15. She was one of the youngest people to have had it in the country and hers progressed more rapidly than other cases.
It was very hard to go through such a hard time for I was only 12 years old. She first had leg braces and then a week later needed a walker. Right after she had her walker she needed a wheel chair. Soon after that she couldn't even move. I miss her so much but I know that this experience has all made us stronger and I know that I will see her again some day. I know what you are going through.

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