Shifting Possible Diagnosis

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Will

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Joined
Dec 1, 2010
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82
Reason
PALS
Diagnosis
11/2010
Country
US
State
AZ
City
Cottonwood
Hi, my PALS has been diagnosed for 2 years with ALS. But after not progressing, doctors are looking around for other possibilities.

One possibility mentioned in Amyotrophic Mononeuropathy. Can't find it on Internet Search. Anybody know what this might be? Thanks.
 
Will you probably mean Multifocal Motor Neuropathy. It can be mistaken for A L S.
If you scroll down on the main menu you will see a section on MMN.
 
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This is what I found in the dictionary, don't know if that helps.

amyotrophy - progressive wasting of muscle tissues
mononeuropathy - any neuropathy of a single nerve trunk
neuropathy - any pathology of the peripheral nerves
 
yes its my understanding that sometimes it hits just one area and stops - think it may be called flail arm syndrome- Im not a doctor so may be way off beam but have a look see what you think - good luck
wright one of our members is a professor at medical school he may know
 
Hi Amyotrophic Mononeuropathy is a very very very rare disease that works like als but affects only one limb, usually one arm.
 
Kiara I vote for your answer LOL. Interesting condition with only one limb being affected. Will does Jim just have one limb affected?
 
yes i hope your diagnosis changes ... a nice story please
 
Laurel, Jim seems to have both legs affected. But they are both usable, that is, he walks on both. He gets weak after a certain amount of time walking, and has to sit down. But this is not much different from 2 years ago.
 
You wrote he "walks on both legs"? Even when they are weak?
How's that?
Without a cane or a roller walker?

Even when I still can ambulate, I cannot do it without a roller walker.

A cane is no longer providing me a good balance when moving my legs to walk.

Thanks.
 
Laurel, Jim seems to have both legs affected. But they are both usable, that is, he walks on both. He gets weak after a certain amount of time walking, and has to sit down. But this is not much different from 2 years ago.

Will did they ever do a trial of IVIG with Jim? Often neurologists will do that when diagnosis is in question. Many people with A L S have had a trial of IVIG. I am still wondering about MMN. Something worth discussing with Jim's neuro. Fingers are crossed that it turns out to be something treatable!

Laurel
 
Laurel, We are going down to the MDA clinic on Mar 13.....I will mention this to the doctor. Jim has never been offered IVIG. And yes, Nighthawk, Jim can still walk normally, at least for a period of time. After about 30 minutes, his legs weaken and he needs to sit. BTW, Jim has had 4 EMG's by 2 different docs, and they all agreed on the diagnosis. It's just that now, after two years, he has not gotten any worse. It has them puzzled, I think.
 
Laurel, We are going down to the MDA clinic on Mar 13.....I will mention this to the doctor. Jim has never been offered IVIG. And yes, Nighthawk, Jim can still walk normally, at least for a period of time. After about 30 minutes, his legs weaken and he needs to sit. BTW, Jim has had 4 EMG's by 2 different docs, and they all agreed on the diagnosis. It's just that now, after two years, he has not gotten any worse. It has them puzzled, I think.


Thanks for your response.

Undoubtedly, he's in better shape than I am.

I have atrophy in my left foot, atrophy that has "eaten" half size of that foot when compared to the right foot. That in turn is what causes me poor balance problems when I walk and difficulty getting up from a chair.
I can no longer feel safe with just a cane and I depend mostly on a roller walker when walking at home.

By the way, why did the Doctors who diagnosed him acted so hastily pointing out to ALS when it could have been something else?
 
By the way, why did the Doctors who diagnosed him acted so hastily pointing out to ALS when it could have been something else?

That's a damn good question.
The first doc diagnosed after 2 emg's, one month apart.
The second doc concurred (Director of ALS clinic)
The third and final doc (Director of the MDA/ALS Clinic) did 2 emg's, one year apart, and has not changed the diagnosis.

I have read several accounts on this forum of people who have 5, 6, 7, or more years without much progression before things get serious....I am lead to believe that this is what we are dealing with.

Only the Primary Care Physician, and a local neurologist (not a neuromuscular specialist), has raised some doubts about the diagnosis.
 
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