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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 07-03-2011, 01:51 AM   #1
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All doctors said it is not ALS, Then what is this??

My Case:
1- Since almost four years I developed the earliest signs of ALS in m my right lower limb. That was an upper and motor neuron signs.

2- It continued in this leg all this time and I never had any other symptoms.

3- I have been told that I have ALS 2 years ago. Since then, I started to be obsessed and any mistake in my body function I explain it as impending death and the final attack of ALS even mistaking speaking a word every one or two month. Yet, I am not sure if it is true or not. Fasciculation happens to me every few weeks. It lasts for few mints and disappears even more than a month. I smoke heavily since 30 years and drink more than 5 cups of coffee every day.

4- I have Diabetes since 13 years and under insulin therapy.

5- I performed needle EMG 20 days ago with the following conclusion in the report:
- Picture of sensory and motor neuropathy.
- Chronic muscle de-enervation with fasciculation.

6- During all the three and half years my condition is steady and I have no problems elsewhere in my body except in my right lower limb and even this does not progress since about 2 years.

7- I do all my everyday activities and hold a single life and do all the details of my life by myself including the finest details with both my hands.

8- I visited 2 neurologists and both told that due to the course of my disease I have Monomelic lateral sclerosis.

9- I would like to let you know that during my last visit to Egypt Ė last week Ė I did the following activities :
- Climbing the stairs up to the 10th floor in my ordinary way, with other people and no one noticed any defect in my right limb.
- Waking for over 2 hours in a fast way with my son and he could not notice any defects.
- Most recently I managed to carry about 40 kg and climb the stairs in one shot for the 4 the floor.
- Performing stress ECG for 10 mints and it was normal and the doctor did not see even the slightest limping in my gait while going uphill and downhill.
- Most recently, I could carry a 40 kg wait up to the fourth floor.

My question is :
- Could this be ALS?

NB:
About: 2 month ago.
-Some Fasciculation occurs from time to time and disappear for days and weeks in different parts of my body.
- I started feeling my tongue little heave and visited a consultant who said it is normal and not due to ALS. Even though, this also comes and goes and is not fixed problem.

 
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Old 07-03-2011, 10:34 PM   #2
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Atsugi HB User
Re: All doctors said it is not ALS, Then what is this??

Dear mydad2866,
Iím sorry to read your post showing the EMG results. Denervation is bad.
But donít worry that every little twitch will be your last. ALS does not kill suddenly like a stroke or a heart attack. It simply weakens the muscles over the month or years, one by one, until you begin to lose the use of your arms, your legs, your feet, your hands, etc, slowly over time. ALS is not painful, just tiring. Thereís more to learn, which Iím sure youíll do.
The good news is that, your activity level suggests it is a very slow moving disease in your case, so youíll have time to adjust.
There is a LOT of adjusting to do: emotionally, financially, socially, at work, with your family, car modifications and house modifications.
Now that you have a diagnosis, you should learn all you can about your exact disease. Then go to the Social Security website and see if you qualify for SSDI. Youíll need the money.
If you are a military veteran, call the VA to ask if they can help with healthcare and financial benefits.
I wish you the best.
Regards.

 
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Old 07-04-2011, 01:46 AM   #3
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Re: All doctors said it is not ALS, Then what is this??

Thank you for your reply but I would like to ask you one question:
Is your reply a professional one? I mean are you specialized in ALS?
Thanks again.

 
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Old 07-13-2011, 01:47 AM   #4
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Re: All doctors said it is not ALS, Then what is this??

Hi mydad,

You actually have been given some very good news! If 2 neurologists have diagnosed you with monomelic lateral sclerosis or monomelic amyotrophy (MMA), you should breathe a sigh of relief- This is NOT ALS and is generally a benign condition. Any disability is usually mild and from your list of "can-do's" it sounds as if you're doing well with it. It's often misdiagnosed in the early stages as ALS. Also in the majority of cases, it stops progressing within 5 years.

You can expect to have a normal life span!

zuzu
P.S. Here is some additional information for you on this disorder. It's from the National Institutes of Health in the USA:
http://www.ninds.nih.gov/disorders/monomelic_amyotrophy/monomelic_amyotrophy.htm

Last edited by zuzu8; 07-13-2011 at 02:02 AM.

 
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Old 07-16-2011, 03:57 AM   #5
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Re: All doctors said it is not ALS, Then what is this??

Thank you so much, indeed more than 2 consultants have said it is not ALS the last of them was the one who examined me 2 years ago. I visited him last wendesday and he denied the diagnosis of ALS completely. Dear, let me wish you the best ... and take care.

 
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Old 07-16-2011, 12:04 PM   #6
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Re: All doctors said it is not ALS, Then what is this??

So happy for you!
zuzu

 
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