just diagnosed with motor neuron disease

[buenosaires]

Well, one neurologist had noticed compression of my spine because of a protruding disc, but then she read the note from the radiologist - who said it was not significant enough to cause problems - and dismissed it.

Maybe I have more than one problem, but the problem with my neck has not been identified, and I've never heard of any MND causing it, so their theories do not make sense to me.

The good thing is that he's sending to me another MRI (another angle at least, not a different type of machine, I don't think), so maybe that will show more serious disc protusion and spinal compression, which I believe is going to indicate injury and not Hirayama. I don't believe that Hirayama would show any abnormality in the MRI I had.

Hirayama would actually be a good diagnosis, because at this point I should have stopped progressing (according to everything I've read, not according to this neuro) and since like I've been saying I don't feel like I'm getting worse, that's one thing that makes sense about Hirayama.

But does the denervation in my arms indicate current damage being done, or would that continue to show up after Hirayama stopped, I don't know. He thinks it's ongoing.

Not many things make sense about Hirayama, as I detailed in my last post. This is one article about slow progression ALS (apparently it can possibly stop?)

Brachial amyotrophic diplegia: A slowly progressive motor neuron disorder -- Katz et al. 53 (5): 1071 -- Neurology

Charlotte - I told him about the boils on my arms, he didn't say anything about it.

 

[buenosaires]

Do they block posts with links on here?

 

[charlottecorday]

Sometimes, I think it depends on if it's beneficial to the forum,like informative probably not.If they think your scamming, yes. Moderators decide on all that.

 

[joelc]

Yes, all posts with links are flagged for a moderators approval. It doesn't usually take too long, but it depends on the day and hour. Or other unforseen problems, like what just happened to me. My computer died Sunday night and we jut got it fixed an hour ago.

 

[buenosaires]

Okay, thanks, my reply is up now.

 

[wright]

Hello BA

I'm glad to see that they are now willing to investigate your cervical problems further. Try to remain optimistic that is the cause of your problems.

Your question: But does the denervation in my arms indicate current damage being done, or would that continue to show up after Hirayama stopped, I don't know. He thinks it's ongoing.

The answer is no. Active denervation (i.e. fibs and psw's) will disappear once the muscles have been reinnervated and are no longer being actively denervated. Therefore, whatever is causing your denervation is continuing to cause denervation, so at the time of your EMG, the denervation was ongoing.

Brachial amyotrophic diplegia is not ALS. It is a type of MND but it only affects the upper extremeties. Just a little FYI.

Take care and good luck.

 

[buenosaires]

Thanks Wright.

Under the case reports here there are some examples of ALS slowly progressing for decades:

SPATACSIN mutations cause autosomal recessive juvenile amyotrophic lateral sclerosis ? Brain

 

[olly]

hi buenosaires.
i mentioned BAD in your other thread...........also called flail arm syndrome.
did you look at the info sites i posted about this?
did you ask for a contrast mri? if not it would be worth calling your neuro and ask if you can have it done.

 

[buenosaires]

Yeah, I read your link. Doesn't that say that "flail arm" has only a slightly longer life expectancy than ALS? I've seen BAD described as something that progresses very slowly. There seem to be multiple uses of "flail arm" and "man in a barrel." It seems the doctors can't predict anything, they just change the diagnosis depending on what happens.

I think the prescription says with and without contrast, does that make sense?

 

[rose]

The with and without contrast dye does make sense. I've had that done. They just do the imaging twice while you're at your appointment. good luck.

 

[wright]

Given that after 7 years you lack upper motor neuron symptoms (or at least you haven't indicated you have any), I don't feel you would be included in the group of rare people with that variant of ALS. Remember, ALS is a disease that affects both lower motor neurons and upper motor neurons, and you simply do not fit those criteria (again, as far as you have told us).

I wish you luck with your MRI.

Isn't it sad that this is a forum where one wishes an MRI would show protruding disc issues or any other, otherwise scary disease or condition.

 

[buenosaires]

Wright - They haven't told me if I have UMN symptoms or not. I should have asked, but I guess I wasn't thinking. I guess I assume they'll tell me important things, but they probably don't. The last neuro did say that my leg reflexes are slightly brisk, but he wasn't too worried about it. Do any of the UMN symptoms show up as things that I'd noticeably experience?

Yeah, protruding disc, or looking at my blood test hoping I failed, that I have a thyroid condition, anything, even hoping I might have an antibiotic resistant flesh eating bacteria in my spine.

Thanks, Rose. I thought he mumbled with and without contrast, and there is something on the prescription that appears to possibly say that. He actually asked me if I can read Spanish (he wrote a note for the other neuro also) I said yes, but he wrote in doctor's scrawl, so I can't read a word.

 

[wright]

Upper motor neuron symptoms would include spasticity, stiffness, brisk reflexes (slightly brisk doesn't really count especially if they are symmetrical, which is why your neuro wasn't concerned) and the manifestation of a few primitive reflexes (e.g. Hoffman and jaw jerk). You would more or less know if you had these symptoms (not so much the primitive reflexes) and I'm sure your neuro would have told you as well.

 

[buenosaires]

Okay, thanks.

 

[buenosaires]

Re: just diagnosed with motor neuron disease MRI UPDATE

I got the results from the MRI that studied my neck bent forward, backward, flat, and then flat with contrast. I haven't taken them to a neuro yet. This is the report of the radiologist, translated from Spanish as well as I can. One word "uncoartrosis," 'm not sure about. "Artrosis" is osteoarthritis, but I don't know what the "unco" would translate as. So I'm wondering if Wright or anyone else can get anything out of this relating to the denervatory activity in my arms. Thanks.


Minimal disc protrusion C5-C6 posterior medial osteoarthritis associated at this level. Observed decrease of the corresponding neuroforamens.

Osteoarthritis also observed in the C6-C7 level.

Hypertrophy of the articular vessels in these levels.

The findings described significantly decreased the diameters of the spinal canal, mainly in hyperextension.

Spinal cord morphology and signal within the normal limits.

Pathological enhancements are not observed after administration of gadolinium.