Neck Extensor Muscle Weakness

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Jon1950

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DX MND
Diagnosis
12/2020
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US
State
VA
City
Ashland
I am a 70 year old male, and my neurologist has diagnosed me with isolated motor neuron disease, which has been confirmed by a second opinion. Both neurologists believe that it is likely to be ALS, but it cannot be definitively confirmed except by seeing how it progresses. It presented as atrophy of the neck extensor muscles (dropped head syndrome) and so far, although I am experiencing some generalized weakness, atrophy has not been confirmed in other muscle groups. If any members have ALS that began in the neck extensor muscles, I would be very interested in how it has progressed.
 

Clearwater AL

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1,990
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Jon, maybe you could expand if you have had EMGs and what was the summary/conclusion.

Also, what ALS facility are you going to? Two? I see you have had a second opinion.

Are you a veteran?

It's frustrating you're in this limbo of a diagnosis. Many others have and are.

I have "dropped head syndrome." I am in my 70s too.

I'm not as knowledgeable as some of our very ALS knowledgeable members
but... "isolated motor neuron disease" is a new one for me as much as I have
followed this Forum.

I know this is your first post but the more info you can post the better our
ALS knowledgeable can reply.
 

swalker

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Joined
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Vail
Welcome aboard. Ashland is certainly an beautiful place! I have been through there quite a few times.

Steve
 

Jon1950

New member
Joined
Feb 24, 2021
Messages
2
Reason
DX MND
Diagnosis
12/2020
Country
US
State
VA
City
Ashland
Yes, neurologist did an EMG in mid-November, which is the primary basis for diagnosis, & all the other standard tests, including MRI and a neck biopsy. I would say that the diagnosis so far is that my neck extensor muscles have atrophied, and that is due to motor neurons dying. Looks like ALS. However, so far it is confined to my neck extensor muscles, which is unusual. Therefore we need to wait and do another EMG in a couple of months, and see whether/how it is progressing before making a definite ALS diagnosis. Although not specific to a particular muscle group, since November I have experienced a generalized decrease in muscle strength.

Thanks for your interest.
 

Sonne

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Joined
Oct 3, 2020
Messages
16
Reason
DX MND
Diagnosis
12/2018
Country
CA
State
ON
City
Toronto
I've had neck weakness for a long time now. Long before I got a definite diagnose of ALS. I have trouble holding my head up and it drops forward for much of the day, which causes me problems with my spine and so forth. I purchased a neck brace from Symmetric Designs on Salt Spring Island, BC Canada. It cost about $400.00 but is very much worth it and would highly recommend it. It is more difficult to do things so I mostly waer it when I'm watching tv or resting. If you have any kind of medical aid they might cover it for you as it is advised for ALS patients. It is a simple medal, poly covered frame that allows for air circulation. I have some skin issues and find the covering causes irritation so I've taken a strip of silk from an old scarf and wrapped it tightly around it and pushed a pin in to keep it from unraveling. Look in to it as it does help with any pain or discomfort you might have.

If the cost isn't a problem for you I would highly recommend using one. It's not like it's going to increase any muscle weakness, it just helps the load and anything that can help with pain or movement is valuable. All the best.
 
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