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.

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).]

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

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.

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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Hi - so sorry to hear of your loss. I am sure you miss your sister very much.

Hi,

I know that some months have passed by since this discussion was started, but since I found this site now I thought I would reply.

My Mom was diagnosed with ALS in January 2001. The symptoms (loss of voice) that made her to see a physician started around August 2000. So, it took half a year for the doctors to figure out what's wrong with her, and it was said that in her case it was diagnosed early since usually the diagnose process can take years.

When Mom was diagnosed with ALS, she was given a year time to live. My Mom had a bulbar onset, which of course affects the rate of progress. It's been over 1,5 years from the diagnose, and Mom's still alive. But she lives in a hospital.

Mom's always been a fighter, and due to her athletic background her muscles were in a very good condition before this, so that partly has slowed down the progress.

To make a long story short: First, Mom lost the ability to speak, then her lower extremities lost their stength, sometime after that it was the upper extremeties. We tried to take care of her at home, and we were provided equipment to help us in this demanding job. Since ALS patients often develop a lot of mucus, we had a suction machine at home, and of course Mom had a walking aid. Around Christmas 2001 she started to use a wheel chair also indoors, and in January 2002 she was taken into a hospital because we didn't have the resources to take care of her anymore.

When she was taken into a hospital she gradually became immobile. At the moment the nurses take her out of the bed only to give her a shower. She uses a negative pressure ventilator, and she has made a will whereby she states that she doesn't want to have a tube.

Luckily, Mom got a communicator (a little keyboard type machine that gives out the written things in a spoken form) soon after the loss of her voice, and she still can type some, and that way communicate with us.

From what I have heard, ALS usually progresses quite quickly, and there can be periods when one goes really down, but then periods when everything's stable.

I wish strength for everyone who's dealing with ALS.

~whippo~

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- Life is short, goes by too fast. So while you can, make it a blast. Make memories that will last. Don't live your life with regret. There will be mistakes you wish you could forget. But remember all the times, the good and the bad. The ones that made you happy, the ones that made you sad. Love life and appreciate what you've done. And you'll find that true living has just begun. -

x-nitemops,
The fact that both you and your wife have the same symptoms make things very suspicious.

Have both of you been exposed to organic chemicals, pesticides, fungicides, insecticides, drugs, paints, etc that may have triggered this?

And have you checked out the website for Low Dose Naltrexone website for treatment?

Thank you all for the answers, opinions, personal stories and words of comfort. This is a very diffucult time for my family and myself. The wondering, the not knowing and anxiously awaiting a EMG and blood serum tests. They are scheduled for the first week in Dec. The EMG is for both arms and my rt leg. I've heard that they are painful. But heck, even walking and going to work (yes I still work PT) hurt like hell. But really, how much is this EMG going to hurt? Do you think that I'll be able to drive the 50 miles home after the test? This is all a bit overwhelming to us.
And to answer the other question, yes we were exposed to something on 8/27/01. We don't exactly know what it is, but the who and the how; we know. We just aren't suppose top discuss it. Even with our Dr's.
Thank you all for reponding,
X-nitemops

Hello and I too have the same symtoms that you do although I have not been formally dx yet. How are you coming with the disease at this point. Are you still able to walk all right and have the big jolts stayed with you. Also did you have ever have a pins and needles sensation in your feet along with the twitching.. Originally posted by x-nitemops:
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.