All right...so what IS the difference?

[biowham]

Now that I have a dx of cervical demyelinating myelopathy, can anyone parse for me the differences between that and its etiology and MS? It's not "fulminating," so it can't be anything acute. Let's just ignore the brain plaques and tspine plaque that I have for now. I'm just curious about what the distinction would be between something that's knocking off axons in the cspine and MS--what are other possible "names"? Is this a kind of "proto-MS" demyelinating thing?

Muchas gracias--
Bio

[Guitar_grrrl]

I'm really interested to see what's posted in the resposnses.  My neuro is calling mine "Spinal Demyelination Disease".  Is this similar?  

[Quixotic1]

I think it is a cop out.  It's a pseudo-answer until there is enough evidence to make the doctor comfortable.

There are other syndromes of spinal demyelination like Transverse Myelitis, but then that should be the diagnosis or ADEM.

It's like declaring that someone has "meningitis."  Fine. What kind of meningitis...bacterial (if so, what kind?), TB, fungal (okay, what kind?), viral (often cant' say.)

Spinal Demyelinating Disease is too high up on the outline to have much meaning.  I would ask them to name three of the things that it really could be with that name.  I suspect that MS is the only one on the list.  Maybe I'm wrong.

Quix

[doublevision1]

bio, I think I may have mentioned this to you already but can't remember as there are a few others here right now being tested for this, but Devic's disease might be a consideration.  It can cause cervical demyelinating myelopathy.
Did your doc mention this at all?  
Have you been tested for it?

[biowham]

Hi, Double--

I think they may have run the NGO Ab test? I'll look into it. I really haven't ever had any significant optic nerve issues of which I'm aware.

Quix...I think the same thing, and he really almost said as much, given that he had nothing else to offer. This is not an acute thing at all. I'm going to do exactly what you suggest the next time I see my local neuro. I don't really care at this point because it is what it is, but it's just a funny distinction to make.

Guitar grrl..really, the differentials are fairly limited--ADEM-type disease, the Devic's that double mentioned, transverse myelitis, and MS. A couple of things I personally can't have because I'm female. That's it.

Really, I don't even count as purely "spinal" because I have an abnormal brain MRI.

Bio

[Rena705]

I can see the frustration in your words my dear and I just want to say that I am sorry that you still have received any closure on this whole thing.  I have to agree with Quix that this is a cop out and he is just hedging until he really know what the heck is going on.  I hope that you get some answers soon...this has really gone on long enough!

Lots of Hugs,
Rena

[biowham]

Hi, Rena--

Thanks for the nice words, but quite honestly...I'm not feeling frustrated at all but pretty peaceful. I exercised today completely free of worry about whether or not I was somehow exacerbating something in my tspine that would make some disc thing worse and bring on surgery. It's the first time in almost a year that I haven't been dithering with every twinge in my feet and legs about whether or not I should "just go ahead and do the surgery." It's a huge relief to me. The rest...I can wait.

Bio

[PastorDan]

Is there an ICD-9 code for "cervical demyelinating myelopathy"?

[biowham]

I don't know. They might put it under CNS demyelinating diseases, unspecified or something like that.

Bio

[shoshin]

Glad to hear you're making some progress and that you were able to hold your ground and demand some answers.

I understand the relief of not having to worry that you're hurting yourself by moving. When I thought I had peripheral neuropathy and they didn't know what was causing, I always worried that I had a kind that could be aggravated by use, especially when I always felt worse during and after exercise.

I hope you get a more specific answer soon.

sho

[Ufrustrated2]

OK for the short term, I can see a "CNS demyelinating diseases, unspecified" but, 9 times out of 10, doesn't a doctor need to get to "specified"?  

how does insurance pay for "unspecified" and how does a doctor treat "unspecified" ?

[biowham]

They don't because I'm not having any treatment, and really, if it were specified (as PPMS), I probably still wouldn't do much in the way of treatment. I haven't actually seen any ICD-9 code for this dx...I was just freewheeling that answer.

My doctor will get to specified eventually. Time will tell.

Bio