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Kitchener

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PALS
Diagnosis
03/2011
Country
AU
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Western Australia
Hello All

Another round of test results are in:

I don't have SMA type 4 (genetic test normal)
Another dirty EMG (left arm no good, but left leg OK)

Armed with all the accumulated tests to date, and my (thankfully) slow progression, my neuro has now postulated I have something she calls "Restricted anterior cell disorder"

Apparently this is quite good news, as there isn't any evidence that the disorder (as opposed to the disease) will cause a material impact on life expectancy

I can expect my arms to progressively deteriorate over time (symptoms restricted to the right hand at present and getting worse there, with perhaps a bit of weakness in the bicep). The ultimate level of disability is not known, but could range from not so bad to totally useless.

If I'm lucky, it won't spread to the legs. If I'm not, it will.

I'm curious as to whether anyone has heard of this condition (I'm starting to worry my neuro is making things up as she goes along!)

Many thanks

Kitchener
 

Alyoop

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NZ
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NZ
Kitchener, that's good news.
Well you know what I mean. When you think you may have ALS, any alternative suddenly seems a little less grim, we move our goal posts. It's good that it's slowly progressive, ( looking on the bright side here)
I am pretty sure that anterior horn disease has been discussed here, and quite recently. Maybe put a search in for it. Personally, know nothing about it at all.
Aly
 

Zaphoon

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DX UMND/PLS
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08/2011
Country
US
State
Missouri
You may find this interesting:

http://www.ninds.nih.gov/disorders/motor_neuron_diseases/detail_motor_neuron_diseases.htm

(First paragraph copied and pasted below)

"The motor neuron diseases (MNDs) are a group of progressive neurological disorders that destroy motor neurons, the cells that control essential voluntary muscle activity such as speaking, walking, breathing, and swallowing. Normally, messages from nerve cells in the brain (called upper motor neurons) are transmitted to nerve cells in the brain stem and spinal cord (called lower motor neurons) and from them to particular muscles. Upper motor neurons direct the lower motor neurons to produce movements such as walking or chewing. Lower motor neurons control movement in the arms, legs, chest, face, throat, and tongue. Spinal motor neurons are also called anterior horn cells. Upper motor neurons are also called corticospinal neurons."

I didn't know that spinal motor neurons were also called anterior horn cells.
 

Toto's Dorothy

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I read a post on this I thought. For some reason kims definiton was very familiar.

I do trust the N I H sites.

Kim, you know tke old saying, "kyou learn someting new everyday".

Kitch, good luck in your search. And is there anywhere else you can go for a second opinion?
 

notme

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Apr 3, 2011
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It sounds as if you aren't going to have to worry about breathing issues--which is what ultimately kills most with ALS--their muscles simply won't let them get air.

It sucks to lost limbs, I'm right there with you....but in comparison--it's loads better. What did they recommend?
 

Ms. Pie

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10/2010
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CO
Good luck Kitch!
 

trfogey

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There are several diseases that are considered AHC diseases. ALS, PMA, SMA, CMT, and Kennedy's Disease are the ones I can remember. From the sounds of things, Kitchener, whatever you have is progressing too slowly to be easily identified -- which, with AHCD's seems to be a good thing.

Good luck.
 

Kitchener

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Joined
Mar 29, 2011
Messages
88
Reason
PALS
Diagnosis
03/2011
Country
AU
State
Western Australia
Hello All

Thank you so much for the kind replies - it's a great comfort
From what I can gather "anterior horn cell" and "motor neuron" are practically interchangeable and as Tr points out appears to be a collective catch-all term. In Australia, anterior horn cell disease = ALS. My neuro reckons that my condition is a "disorder" rather than a "disease" - the distinction coming from the thankfully slow progression. She also reckons she has two other patients in the same boat, diagnosed 10 and 20 years ago respectively. The chap diagnosed 20 years ago has lost practically all function in his arms, but is otherwise OK. The 10 year guy is half-way there.
In terms of what I have been recommended, it is to "keep fit and healthy", continue with the IVIg and perhaps supplement with co-enzyme Q10 tablets (non-prescription). The neuro still believes the IVIg is most likely slowing down progression by eliminating inflammation.
This is now my fourth diagnosis in 12 months, and while its not exactly sunshine and laughter it's the best I've had so far.
Many thanks again for your good wishes, it's really appreciated
Kitchener
 

fitzroy

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Learn about ALS
Country
AU
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VIC
Kitchener,

I had mentioned AHCD in one of my posts as the differential noted on one of my referrals. I agree, it's probably the standard notation in Australia for the MNDs. As to the "disorder" part, it's certainly good news that nothing is progressing quickly. Or rather the opposite, that it's moving very slowly.

Jenn
 
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