Diagnosed with Monomelic Amyotrophy - Need Analogous Disease

KateMMA

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Hello! I was recently diagnosed with monomelic amyotrophy (Hirayama's Disease). Has anyone else received this diagnosis? I'd love to chat since I can't find a lot of information about it.

I am in the military and they are putting me on a board that will determine whether or not I will be able to continue serving. I am going through the VA process and they want to know an 'analogous disease' since it is not listed in their regulations because it is so rare. If anyone has any thoughts on this, I'd really appreciate it.
 

Nikki J

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Hi we have had a few people with it You might find posts if you search but I don’t think anyone currently here has that diagnosis

Were you diagnosed by a military neuro and did you get a second opinion? Could either of them help with the analogous disease question ? Especially the military doctor who would be more familiar with what would be acceptable

Sorry ou have ot deal with this
 

KateMMA

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Hi Nikki, thanks for the response!

I was diagnosed by a civilian neuromuscular specialist and my military neurologist agreed with the diagnosis. I haven't gotten a second opinion from another neuromuscular specialist though.

I don't see my neuromuscular specialist again until my next EMG in August (I'll have one every six months from now on to make sure it's not spreading) and I don't have any appointments scheduled with my neurologist. I can call my neurologist to see if I can talk to her or make an appointment though.

I just thought I'd ask here in case anyone has any experience with this disease. I'm also curious if there is anyone else with it who doesn't meet the normal criteria. According to everything I've read, people with this disease are normally overwhelmingly adolescent asian males and I'm a 35 year old white female. So, it's just kind of strange and I wanted to know if there were any other 'zebras' (as the nurse put it) out there.
 

lgelb

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It is also called:

Benign focal amyotrophy
Neuralgic amyotrophy
or if you want it to sound more serious, a self-limiting lower motor neuronopathy.

The attached paper shows that the Asian young male thing is not as locked down as it once was. Cases get into the sixties.

If you have to have a neuromuscular disorder, this is a great one to have, but I'm sorry that it's affecting your career (and obviously, life).

Best,
Laurie
 

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KateMMA

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Hi Laurie, thank you for the response and the article!

Thank you, also, for the other labels used for the disease. Hopefully one of them will be useful to the VA.

Do you know of any other diseases that are similar to MMA, in case these terms are also not listed? They said that if a disease is not listed, they look at a similar one and use it instead.

Yes, I was relieved when I received the diagnosis of MMA because it was looking like ALS for a while, although I had hoped it would be Carpal Tunnel or a pinched nerve. I know that I'm very lucky.
 

lgelb

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In truth, because it's a motor neuronopathy, unless you are diabetic (in which case there might be a temptation to consider it diabetic amyotrophy), it's most analogous to ALS. It is just a focal, self-limiting form. But if you jumped over to the muscular atrophy realm, they would be looking for a causative injury or a hereditary connection.

However, I see that ALS has its own separation in the VA system as it is presumed service-connected and I don't think they'll buy that in your case.

It might be worthwhile to consult with an attorney whose specialty this is.
 

KateMMA

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I'm not diabetic, so I don't think that will apply. My lawyer is the one who asked me to do some research about an analogous disease because she's never seen a case like this one and when she looked for it in the legal case history there were only two cases with an MMA diagnosis; one from the Vietnam War and one from the Gulf War. However, neither were on active duty at the time of diagnosis and the legal cases were about making them service connected after the fact.

The way it was explained to me is that any diagnosis or injury incurred while on active duty is presumed to be service connected unless it as a result of misconduct (ie. Hurt back from a drunk driving incident) or if it is a condition that existed prior to joining the military. If I'm separated, it will be service connected, they just need to figure out how they're going to define the diagnosis.

I'll talk to my neurologist and neuromuscular specialist as well. Thanks for all of your help!
 

lgelb

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Ah, I see -- I had forgotten the service connection is presumed. I know it is for ALS, I was just trying to say they're not going to see ALS itself in this.

Would your history meet the criteria for brachial neuritis? That's in the system.
 
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