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Nordman

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Hi

41 year old man here.. Here is my story..

  • I have always had very thin shoulders and arms. (The other kids made a little fun of me in school).
  • I have never done any systematic exercise or working out.
  • The last couple of years i have increasingly felt weakness in my arms. Especially when preparing food, or folding clothes etc. Right arm feels weaker than left.
  • January 2014, i started working out and it became evident i had some problems, i had problems raising my arms and used other muscles to compensate.
  • Did a MR and ultrasound of the shoulder. They could see atrophy and fat infiltration of the muscles.
  • I went to a physical therapist. They did some physical tests and saw some of my arm/shoulder muscles were practically paralyzed.
  • Went to see a neurologist:

  • I think Sensoric and Motoric Neurography was fine - I have no problems sensing things with my fingers or skin. I think nerve speed and that was also ok.
  • The EMG however was pretty bad, C4, C5, C6 and C8 bilaterally, and C7 right side, was chronically deteriorated.
  • EMG said legs are normal
  • I believe C1-3 and T1 was also fine.
  • The neurolog concluded in his written summary that: It could fit with multiple Cervical Rhizopathy, or (SMA)?
  • (The neurologist put the question mark in there, after SMA)
  • Did a MR in a 1T machine. They did not see any problems, but indicated that the pictures was a little unclear and recommended i get a MR in a 1.5T machine.
  • Saw another neurologist who checked all sensor and motor functions, tongue out, eyes, blow cheeks, touch nose, stand on one leg, reflex hammer etc. All was fine except the weakness in my arms. He is now sending me to the 1.5t MR machine.

So now, i am waiting for the new MR, and is obviously a little scared in my pants :neutral:

It’s a good thing that it is contained to C4-C8, right? Can that indicate that its not ALS? Would ALS at least show some deterioration of the other nerves?

But, I guess i clearly have some form of Motor Neuron Disease.. Comments are welcome :)
 

Nikki J

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Hi
Sorry for your troubles
It sounds like they are saying it is either cervical radiculopathy ( caused by nerve compression) that is what they are looking into with the MRI. Not at all a motor neuron problem
The other issue SMA is anterior horn and does affect motor neurons but onset at your age while very debilitating does not usually shorten your life.
Research SMA III see if it sounds like you. ( don't focus on types 1 and 2 only read about 3)
From what you report it sounds more like that than ALS. Do let us know what happens. Of course we hope it is your neck which would be the best answer
 

skipper66

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You wrote medical words and stuff that I don't even know what they mean. I would trust a doctor rather then us to answer your questions for that very reason. They have a medical degree and we don't. Just because you have something going on you don't ever need to jump to the conclusion it's ALS right away. Good luck to you. !
 

Atsugi

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Nordman, first let me say I want a first class ticket to come to your country. I think I might even want to live there. Is Norway accepting American visitors to become residents?

Thank you for the complete description of your tests and results. It sounds like your doctor is suspecting a neck problem, not ALS.

(Skipper, a 1.5 T MRI machine is more "powerful" than a 1; it's more "insightful." The machines are measured from 1-3 Teslas.)
 

skipper66

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Glad to hear that they don't think it's ALS and possibly a neck problem. But, that doesn't sound like fun either. Hope you get some relief soon. Also, we do thank you for giving us a complete description and your test results. That way members who know more of the medical stuff then me can chime in. Please take care. Kim
 

Dusty7

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"But, I guess i clearly have some form of Motor Neuron Disease."

Not necessarily. A rhizopathy is a nerve root condition, possibly caused by decay of the cervical spine. But the fact that you have had issues since childhood may point away from that...

SMA (spinal muscular atrophy) is a genetic disease, with many types and subtypes. Type III (which Nikki referred to) has onset of symptoms after age 18 months, usually in late childhood or adolescence. Also known as Kugelberg Welander SMA, or mild SMA. (From your post it's hard to say when your symptoms started, though it sounds like in childhood.)

Although the traditional classification system focuses on only 3 categories, many sources refer to a fourth type of SMA, Type IV which is reserved for onset of symptoms during early adulthood. This disorder usually carries a much more favorable prognosis than do the other types of SMA.

I would say your neuros are hoping the MRI with the more powerful machine will give them physical evidence of whether this is a nerve root problem or not.

In any case, it does not sound like ALS, and you're on the right track for a diagnosis.
 

Nordman

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Guys.. Thanks for the replies! :)

I got the written summary from my second neuro, he seems to dismiss a little the SMA theory from the first neuro, because there are no symptoms in legs or diaphragm.

Second neuro also questions the neck problem because there is no pain or sciatica symptoms..

Second neuro is theorizing about Limb-Girdle with weakness in shoulders and upper arms. It fits the observations and can even explain why i have been thin in shoulders and arms since childhood.

Oh, well.. I just started the journey of diagnosing this. Hopefully they find some explanation soon. Kind of crossing my fingers for Limb-Girlde now :)

And Atsugi, yes Norway is a nice place, americans should have no problems moving here! You are welcome :)
 

MaxEidswick

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>And Atsugi, yes Norway is a nice place,

a great place albeit expec$ive ...
 

gooseberry

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Sounds like you have a good neuro. Are they doing any more bloodwork? Several of the MDs are genetic.
 

Nordman

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Yeah, they drew some blood, i know ck was one of the tests, but I don't think they are doing gene testing yet.

This neuro is at a private clinic, i was assigned to it by my work place's private health insurance. He will evaluate the blood tests and the next MR, but he already indicated i probably have to go to one of the larger public hospitals, with a broader range of specialists, for further diagnosing.

The more i think about it, i believe i have had this since childhood. I have a little hunched back, and forward pointing shoulders. If my shoulder muscles never developed properly, and my pecs were ok, the pecks would be stronger and pull my shoulders forwards as i grew :)
 
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