transverse myelitis

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transverse myelitis

Postby billf » Tue Feb 15, 2005 10:51 am

My wife was dignosed with MS 6 years ago. Her sister was diagnosed with MS two years ago, but has recently been re-diagnosed as having transverse myelitis. A quick online review of TM makes me wonder how Doctors can reliably distinguish between the two. So, maybe my wife also has TM instead of MS. Anyone have some knowledge on this question of differentiation?
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Postby OddDuck » Tue Feb 15, 2005 11:11 am

Hi, billf!

I'm telling ya one thing...........I don't know how they tell the difference between MANY of those neurological disease, they all overlap so drastically.

Sometimes, it just boils down to "gut feeling" by the doctors, I hate to say. Some things they can rule out by "tests", but many more they can't because there aren't any tests or adequate "markers" or diagnostic methodologies that exist - yet - to make those determinations for certain. That's why you'll see so many people being diagnosed with different conditions each time they see a different doctor.

It is all mainly "subjective". No two doctors have ever yet agreed about what I may or may not have. And I've been hospitalized and tested since I was only a few months old. And I'm 49 now.

They still can't agree. Technically, I can claim I have just about any neurological disease you want to come up with, and it can't be confirmed! So, as I became accustomed to many years ago, I simply have a "CNS disease". Like my PCP said recently, we probably will never know for sure. I have suggested and my doctor has agreed that it would be good for me to do, is to donate my body to science upon my death. The only way to know sometimes for certain is via autopsy (or brain biopsy, which again right now, they can't do while you're alive).

In any event, a lot of the treatments for one neurological disease cross over and are helpful for others, also, so keep that in mind.

Best always,

Deb

EDIT: That's why you'll see things that make the news as headlines if/when there IS a way to differentiate between diseases; the most recent example being the article the NMSS posted on their website regarding how they can now differentiate NMO from MS: http://www.thisisms.com/modules.php?nam ... opic&t=855

I'm not certain how productive it would be to try to continue down the road of whether or not your wife has been mis-diagnosed or not. But that's just my opinion. I'm just not certain it will get you anywhere. The more doctors you see, the more different diagnoses and opinions you may get. And then what?

SECOND EDIT: Well, darn, billf! Transverse myelitis encompasses quite a few diseases within it: Transverse Myelitis is a rare neurological disorder that is part of a spectrum of neuroimmunologic diseases of the central nervous system. Other disorders in this spectrum include, Acute Disseminated Encephalomyelitis (ADEM), Optic Neuritis, and Neuromyelitis Optica (Devic's disease).

Have you see this website yet? http://www.myelitis.org/tm.htm

It appears there isn't much difference, except that tranverse myelitis tends to be more of a one-time occurrence of problems, but if it happens again, they then will just say it has transitioned into one of those other diseases you see listed in that last link (MS being one of them). See what I mean? One overlaps the other!

So........bottom line..........can they "reliably" differentiate one from another? No, not really.
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Postby CCmom » Tue Feb 15, 2005 1:50 pm

Boy, Deb, you hit the nail on the head with that answer. Colby was diagnosed initially with ADEM due to transverse myelitis. He never truly recovered from the first "attack" before he had another. Later, when he DID appear to recover in between attacks, the diagnosis got switched to MS, since ADEM is not supposed to hit more than once.

billf, I've been on the road you're on for the past 3 1/2 years, grasping at anything and dragging my research into the docs office with me to get his / her take on it. It took me a long time to come to the conclusion that the neuros are just as baffled as I am. I've relaxed a bit about it, but I never stop my research or take a break for even one day. I just don't bombard the docs with it anymore!

I'm in my Lyme phase now, have been for the past year. I have two friends with MS diagnosis', negative Lyme testing with the old methods, and both are using minocycline and LDN with amazing results. Also, one of them has tested positive for Lyme since starting the antibiotics. Minocycline is used for treating Lyme and MS these days. The more I hear, the more confused I get.

We recently saw a new neuro. My son uses LDN alone right now and is doing really well. This neuro is contemplating putting him on minocycline in conjunction to the LDN, since he cannot tolerate the interferons. Our new neuro has impressed me so far, and seems to think a bit "outside the box", so I'm excited. He isn't endorsing or prescribing Tysabri yet, has elected the same "wait and see" approach that we have.

Okay, back on subject. There is alot of truth to what Deb says as far as how productive it is to pursue a misdiagnosis. I've spent alot of time banging my head against my keyboard, and I've seen alot of docs look at me like I have two heads. If you can do it open mindedly and just for your own curiosity, then by all means, go ahead. But I know how easy it is to get someone's hopes up when you run across something that sounds less ominous than MS, and no matter what I read, I keep it to myself until I get a chance to fully research whatever it is.

Take care!

Kim
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Postby billf » Tue Feb 15, 2005 2:08 pm

OddDuck/CCmom
Thanks for the info.
Does the presence of brain lesions signify definite MS, or are there other things which might cause brain lesions (such as Lyme disease)?
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Postby OddDuck » Tue Feb 15, 2005 3:46 pm

billf,

There are lots of other things that can cause brain lesions, one just being simple "age" alone.

On the other side of the coin, there are certain criteria that doctors attempt to use in order to try to determine if particular "lesions" appear to be attributable more to one disease or medical condition than another (but are they CERTAIN? No.) They tend to look at the location of the lesions, the size of the lesions, the form (if they can see it clearly enough) of the lesions, etc. in order to try to determine if the lesions correspond with what little they know about or could be a result of MS or not.

But, can they determine if you have MS just from the fact alone that you have brain lesions? No. Migraine headaches also cause brain lesions. That's why the MS criteria also has other variables that need to be included along with evidence of brain lesions in order to try to diagnose MS, such as the results from evoked potentials, the LP, blood tests, and neurological tests. You can't determine if its MS or not just from brain lesions.

I'm sorry. Nothing is simple, is it?

Deb

EDIT: Hi, CCMom! It's always great to see you! I hope Colby continues to do great!! Mucho huggos!
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Postby CCmom » Wed Feb 16, 2005 6:57 am

Hi, Deb! Hope all is well with you! I've been reading more than posting lately...

billf, Lyme does cause lesions, along with all of the other things Deb has mentioned, plus about a hundred other things! The deeper you dig, the more confusing it gets. My son was diagnosed on the "appearance" of his lesions alone, and the fact that the attacks reoccured. All of his other testing was negative for MS, and believe me, he was tested for everything under the rainbow at Vanderbilt.

Have a great day!

Kim
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