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L3sorensen

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I have been undiagnosed for 8 yrs. I started having weakness in my left thumb and eventually got atrophy of median nerve. No other symptoms for all these years. About 8 mths ago I started having muscle weakness in the upper part of my arm. They have tested me for auto immune and all other diseases but everything shows up perfect. My mris show nothing as well. The dr wants to treat it as auto immune but I found another neuro that has suggested monomelic amyotrophy . I am looking for advice about where to get a better diagnosis or if anyone knows of anything one this?

Thank you
 

GregK

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monomelic amyotrophy isn't especially common:

Monomelic amyotrophy (MMA), also known as Hirayama disease, Sobue disease, juvenile non-progressive amyotrophy and juvenile asymmetric segmental spinal muscular atrophy (JASSMA) — is an untreatable, focal motor neuron disease that primarily affects young (15–25 year old) males in India and Japan.​

If you do a search on this forum you'll find a few hits including this one:
https://www.alsforums.com/forum/gen...pma/21093-very-confused-need-some-advice.html
 

lgelb

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It is rare in our continent. Here is more info. Have you had an EMG? There are LSU, Tulane or if you are up for a road trip, Houston (Baylor or Methodist).

There are a number of rare MND variants.
 

Atsugi

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I think the morning shift may have a suggestion for you.
 

affected

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Nikki should be in DIHALS?

An ALS specialist neurologist would be in order. If they say no ALS, ask where you should go next?
 

L3sorensen

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For whatever it's worth all the neurologists I've seen don't think it's ALS. They say I would be a lot more progressed by now or worse, dead. Does anyone know more about MA?
 

MaxEidswick

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>I am looking for advice about where to get a better diagnosis

Houston Methodist




Max - Friday, July 17, 2015 9:25:25 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 

L3sorensen

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I am scheduled to see dr Appel in August. My concern is he specializes heavily on ALS and will put me through unnecessary tests. I just want to pick the right place. It is such a huge deal to be seen anywhere I just want to spend the money and time productively. Can you tell me about your time at Methodist and if you felt you were treated as an individual?
Thank you
 

Suzannah

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Hi,

I just wanted to comment on going to Houston for a non-ALS diagnosis.

I went there last summer for to be evaluated for what was likely a pure upper motor neuron disorder. I was very happy with the process. Here's what happened:

I did a long intake over the phone the night before I was admitted.

The first day, they did an extensive neurological exam, standard bloodwork, and an EMG. My EMG wasn't very extensive (both legs and an arm) because it was pretty clear to the doctor doing the test that I did not have lower motor neuron damage (upper motor neuron symptoms don't show on an EMG).

Then Dr. Appel and his team of people (med students, residents, etc) came and met with me and told me that they felt my preliminary diagnosis was probably hereditary spastic paraplegia.
During that meeting, they decided what other tests I needed, and who else I needed to consult with.

He told me that he wanted to go ahead and do a spinal tap to make sure that I did not really have MS (I'm female, in my 30s, which is prime MS time). They also decided to do a breathing test, but only because I told them I had been experiencing some shortness of breath. Otherwise, I don't think they would have done it. I met with the physical therapist and the respiratory therapist (for the breathing test) but did not meet with any of the other people like occupational therapy, nutrition, etc.

I was there for a full day the first day, half day the second, and half day the third. Dr. Appel and his team met with me each day for as long as I needed to get all of my questions answered.

I felt like all of the tests they did were appropriate, and they did not have me do anything just because it ticked a box on their procedure list.

And not to speak for Max, but I know that he has said in the past that his diagnosis was clear by "lunchtime of the the first day" so the rest of his visit was very different then the rest of mine. I did not meet with all of the people that Max did since my diagnosis didn't warrant it.

I would recommend going. Good luck on finding answers. I know how frustrating it is to have a random disorder that nobody seems to know of or anything about.

Sincerely,
--Suzannah
 

lgelb

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I posted a link earlier, but Nikki may be busy. Search on that term. It is still an MND so that is still a place to go, but it's still not treatable (though not fatal). To me, you want to rule out something treatable (like a slowly-progressing immune myopathy), so that is not necessarily an ALS clinic, just a top-notch neuro or see a rheumo first. Been to LSU, Tulane?
 

GregK

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I posted a reply last night that seems to have disappeared also...

A search on this term reveals three (at least) threads. Give Search a try.
 

Suzannah

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Hi, my post seems to be lost in the ether somewhere, too. I wrote about my good experience of going to Houston Methodist for a non-ALS disorder. Hopefully it will show up soon :)
 

MaxEidswick

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> I wrote about my good experience of going to Houston Methodist for a non-ALS disorder. Hopefully it will show up soon

Ditto that!
 

L3sorensen

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Thank you so much Suzannah for sharing your experience. I am, as I'm sure you know, really scared about my upcoming visit. I'm about 6 hours from there and after so many failed neuro visits I just really want to make the right choice about this visit. I appreciate all the advice and information from everyone! And I have tried getting an apt at LSU dr that specializes in this but I am waiting 8 mths for the visit right now. Methodist can see me sooner so I'm going there bc maybe that's where I belong going. Tulane Drs are a worse wait of a year. It's a bit ridiculous trying to get seen in my area.
thank you all for your posts
 

MaxEidswick

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>Methodist can see me sooner so I'm going there

Appel's 3-day diagnostic is thorough
 
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