MS vs. Transverse Myelitis

[Edge Of Ruin]

I have a new neurologist and in my last office visit to him he told me he didn't think I had MS but thinks I might have
Transverse Myelitis. This is very confusing because while reading articles on the net MS and Transverse Myelitis seem to have the identical symptoms except Transverse
Myelitis never involves lesions on the brain. I was originally
diagnosed as having MS because of a lesion on my spinal cord. I never had lesions on my brain, yet the first doctor
said the lesions don't have to be on your brain, they can be only on your spinal cord and still be MS. Many posters on MS World have also said this. It seems like some kind of name game. Some neuros won't call it MS unless you have lesions on your brain. Also confusing is that I read articles that said Transverse Myelitis can be caused by MS and MS
can cause Transvers Myelitis. Once again I find myself in
Limboland.
Surfer Ed

[Grace53a]

Hello,

There are only around 1400 new cases of Transverse Myelitis per year here in the states (as per NINDS). About a third of those cases, can be a first presentation of MS. The remainder of those cases are either Idiopathic Transverse Myelitis (no known cause) or are caused by another underlying disease process (SLE, Neuro Sarcoidosis, ADEM, NMO, CNS Sjogren's, and others).

Transverse Myelitis does not *cause* MS, but can be a first presentation of MS.

Grace (NMO+ since 2005

[Redwings]

Hi Ed:
As you've found "transverse myelitis" has a couple of meanings. It can get confusing when someone doesn't know what the different meanings are, and especially when people who should know better (i.e., doctors) get sloppy about their terminology.

In its most basic form, "transverse myelitis" means inflammation in the spinal cord that crosses the neurological midline, affecting both sides of the body at the same time. The body is wired in halves, and physical damage affects only its own side of the body. For physical damage to affect both sides of the body at the same time, there must be damage on each side of the body. The phenomenon of transverse myelitis isn't restricted to a single disease, and in some cases no cause is ever identified.

When the phenomenon of transverse myelitis exists without a known cause or without other (major) manifestations of a suspected cause, it's often considered to be condition of its own, called transverse myelitis. So the term can represent a kind of inflammatory spinal cord lesion or it can represent a condition on its own. It isn't a "name game," but it does require an awareness of the different uses of the terminology and how they're used in a particular context.

Transverse myelitis is the result of an inflammatory condition, it isn't the cause of one. So MS can cause transverse myelitis, but transverse myelitis can't cause MS. It isn't possible that any article you read that came from a reputable source could have said that transverse myelitis causes MS. As an analogy, the inflammatory lesion of transverse myelitis is like the skin bumps that show up with measles. The bumps are the result of the measles pathogen, not the cause of them.

MS and transverse myelitis can have the same symptoms because ANY condition that causes spinal cord inflammation that affects both sides of the body at the same time will have the same symptoms. That's why NO condition can be diagnosed based on symptoms alone.

From your description of what your new neurologist said, it sounds like he was referring to "transverse myelitis" as the "condition causing inflammation of the spinal cord that crosses the midline and affects both sides of the body at the same time" for which no other cause has been identified. Conditions with no identifiable cause are called "ideopathic." So it sounds like he was saying that you don't have MS but you did have ideopathic spinal cord inflammation. Or, at least, ideopathic until he works you up for other possible causes, which he should.

It's true that MS can exist with spinal cord lesions and no brain lesions. But without characteristic brain lesions, there must be other evidence to support the diagnosis of MS. In your case, we don't know what that evidence was that made your first neuro decide you have MS. We also don't know what made your new neurologist to say that you have transverse myelitis without MS because you didn't provide any evidence that you've been tested for signs/conditions that are characteristic of MS or that you've had the necessary testing to rule out all of the other conditions that can cause transverse myelitis. So that does, indeed, seem to put you back into limboland until all of the necessary testing has been done.

And to add more muddiness to the terminology, "transverse myelitis" is generally used to mean a condition that causes total loss of function below the level of the lesion, including bilateral paralysis. A lesion that doesn't cause that level of loss of function is usually referred to as "partial transverse myelitis." Neither one of my episodes of transverse myelitis caused paralysis, so they are correctly referred to as episodes of "partial transverse myelitis." If your episode(s) of transverse myelitis didn't cause bilateral paralysis and loss of function below the lesion, your condition is more correctly referred to as "partial transverse myelitis."

Grace gave the figure of how many cases of transverse myelitis the National Institute of Neurological Disorders and Stroke (NINDS) estimates to occur each year. I know that my episodes of partial transverse myelitis were never reported to NINDS, so their figures probably don't include episodes of partial TM. That means that that figure may be meaningless to your case, as it is to mine.

From what you've told us, it isn't possible to determine how complete the workup was that led to your initial diagnosis of MS. And we can't know much else, because you didn't follow up on it.

I'm sorry to hear that you're back in limboland. That may not be a bad thing, but it sounds like your new neuro has a lot of work to do to determine what did cause your suspected partial transverse myelitis, as well as the symptoms you've had that are caused by problems above the spinal cord.

[Redwings]

Oops, I'm sorry, Ed. I misread the last part of your post where I thought you said you read that transverse myelitis can cause MS. Please disregard my comments about that. Everything else still applies, though.

[BeneathTheLies]

Thank you Redwings for that excellent post. I now know I technically had partial transverse myelitis. I wish my neuro would be so willing to explain things as well as you do.

[Edge Of Ruin]

Question for Redwings about TM

Thanks for all the info you gave. You always have a vast
knowledge on any of my threads that you post on. I would
like one clarification. Are you saying that Transverse Myelitits is a symptom and not a disease in itself? My spine
is aching badly right now and it would seem the aching pain is caused by inflammation caused by at least in part
by lesions in my spinal cord. I've had so many falls, though,
my spine is a mess. I have herniated disks, degenertive
arthritis of the spine, and curvature of the spine. Whether sitting or lying down I can't find a comfortable position. The strange thing, though, about my new neuro dismissing
the diagnosis of MS is that my history of the past 34 years
has been one of relapse followed by remission. Whatever it is the onset was 1977 but by 1979 I was back to normal. Then the same MS symptoms came back in 1987 and I was back to normal by 1989. Then the same symptoms came back in 1997 and I was back to normal by 1999. All of these remissions were without treatment of any kind and without diagnosis. It was when the symptoms came back in 2006 that I saw a doctor who diagnosed me as having MS. So, like I say, the relapse-remission pattern sounds like MS. I've never had brain lesions but here again you can have lesions only on your spinal cord and have it still
be MS. How can I have all the other symptoms of MS and it not be MS? I know I don't have Lyme's disease because I don't have joint pain and never had a rashy-boil where a tick bit me. It, however, must be a coincidence that I was bitten by a tick in 1977 just before the MS symptoms began.

[RoyaleMSer]

I was originally diagnosed with TM when my issues landed me my first round of IV steriods. The neuro I saw at the time said that for the diagnosis to officially be TM, there can only be 1 spinal lesion involved. If more lesions appear, then the diagnosis is changed to MS.

Apparently, I am a human-sized bag of popcorn, because lesions keep popping up!

[Redwings]

Hi Ed:

Are you saying that Transverse Myelitis is a symptom and not a disease in itself?

To answer this question requires a clarification of terminology. Transverse myelitis is not a symptom. It's a state of inflammation that can be expected to be visible on MRI. A sign is something that can be observed, a symptom is something that can be felt by the person. So, radiologically, TM is a sign. The immobility is a sign. But how the effects of TM (e.g., paralysis, bladder/bowel problems, etc.) are experienced by the person are the symptoms.

So to answer the question more directly (with the proper foundation), I'm not saying that TM is always an entity of it's own, but that it can be, in the absence of no other identifiable cause.

The strange thing, though, about my new neuro dismissing the diagnosis of MS is that my history of the past 34 years has been one of relapse followed by remission.

That's an important point. In making a diagnosis, past history MUST be considered. The complicating factor for you is that your episodes (of whatever they were) before 1997 may not have been assessed adequately and/or documented adequately and/or dealt with adequately. Compared to what's known about MS now, there wasn't as deep a knowledge base to guide doctors AND there wasn't as much motivation to follow through with remitting cases because there were no treatments available then, anyway. Bu no matter how incomplete that past history may be, it has to be considered.

There are a couple of things that particularly complicate your case. One is that the relapsing-remitting nature of your events (whatever they were) isn't exclusive to MS. Other autoimmune, inflammatory conditions can also have a relapsing-remitting presentation. The presentation is suggestive of MS, but not automatically diagnostic of it.

The other complicating factor is your history of other spinal damage. The herniated disks, degenerative arthritis and curvature of the spine can cause some of the same signs and symptoms as MS or other neurological damage. It might be impossible to ever tell what's causing what, so it might not be possible to pick out a symptom at random and use it as a justification for MS (or anything else). It's kind of like pouring wine from California into the same glass with some French wine. When they exist together, it's impossible to any longer tell one from the other.

And that's the task a neurologist faces when trying to assess your spinal effects -- all things must be considered, while at the same time recognizing that one part of history might not be able to be separated from another. At best, there may be a hierarchy of information that can lead to a definitive diagnosis. At worst, there isn't and there are no clear answers.

How can I have all the other symptoms of MS and it not be MS?

Because the symptoms of MS are not exclusive to MS. They are generic neurological symptoms that also accompany other conditions. So those symptoms may very be be caused by other conditions and not MS. That's why it's impossible to diagnose any condition by symptoms alone. To call them "MS symptoms" without evidence is a somewhat presumptive and arbitrary label that can be misleading. That they can occur with MS and might be symptoms of MS doesn't make the cause of them MS.

I know I don't have Lyme's disease because I don't have joint pain and never had a rashy-boil where a tick bit me.

You can't know whether you have Lyme disease based on those two things because that isn't how Lyme disease is diagnosed. Lyme disease is diagnosed by the presence of the Lyme disease spirochete or evidence of the spirochete. Again, just like MS, Lyme can't be diagnosed by history or symptoms alone. The only way to know is to be tested. Since Lyme disease is probably the #1 mimic of MS, if you haven't been officially tested for Lyme, you should be.

it sounds like there are several possibilities for what's going on, and they all have to be considered anew.

[jumpinjiminy]

The MS clinic I went to for a consult said they don't believe in spinal cord only MS, won't diagnose it and won't treat it. They believe it's something else altogether. No brain lesions, no MS. That was their take on things.

[Redwings]

Oops again, Ed. From my last post, the sentence should have said, "I'm not saying that TM is always an entity of it's own, but that it can be, in the absence of an identifiable cause." These are the ideopathic cases mentioned in earlier posts. These are among the cases that are monophasic -- they occur once and never again -- and no cause is ever found.

Monophasic cases can also be identified with a disease, and recurrent cases are usually identified with a disease.

That's why your history of recurrent episodes is important. It has to be determined how many of the episodes involved your spinal cord and to what extent they involved your spinal cord. Spinal cord lesions are not necessarily transverse myelitis. In your case, some of those episodes couldn't be documented because they predated the use of MRIs. It isn't possible to know whether you actually had partial transverse myelitis -- one large lesion affecting both sides of the cord -- or more than one lesion with at least one one each side, each affecting its own side. Your current neurologist has to be able to explain the suspicion of (partial) TM without MS in the unknown context of possible multiple events.

If your current neuro suspects (partial) TM without MS, he has to be able to explain that in the context that recurrent TM -- or recurrent spinal cord lesions that aren't TM -- are usually associated with a disease. Assuming that your episodes began in 1977, and assuming that the first episode involved your spinal cord, it has to be recognized that it isn't typical of MS to exist for more than 30 years without at some point causing brain lesions. (It can happen, but it isn't typical.) If he doesn't suspect MS, he should be able to attribute the recurrences (if that's what they were) to some disease, because recurrent TM isn't monophasic and ideopathic. His job isn't finished by just speculating about TM without MS. There's a lot of evidence that has to be sorted through and interpreted.

[Edge Of Ruin]

Response To Redwings on Lyme Disease

This might seem incredible by I have never told any neuro
that I was bitten by a tick in 1977 just before all the terrible symptoms began. The summer of 1977, I was going
to the beach every day and had the deepest sun tan I ever had and was feeling great. Then that fall I was walking in a wilderness area with my dog when we were bitten by ticks.
It was very soon after this that the MS-like symptoms all
started and I had to drop out of the university of Santa Barbara. I went from doctor to doctor but none gave a diagnosis but 1977 was the year they first knew anything
about Lyme disease I believe so most doctors wouldn't have
known much about it. I guess it's about time to tell my current neuro about being bit by a tick in 1977 after which
the onset of my symptoms occurred. Perhaps there is a test to tell. I never said anything because I never knew anything about Lyme disease and its connection with ticks.
It may have nothing to do with my case but I should cover
all bases. I had even forgotten the incident of the tick until
I recently read an article on the net about Lyme disease and then I remembered just before the onset of my symptoms I had been bitten by a tick.

[Edge Of Ruin]

Different Kinds Of Falls

I've been thinking of all the falls I've had from losing my balance that have caused spinal injuries and might have led
to Transverse Myelitis but then I can't even count the times
I fell off my surf board and went under the falls and got pounded. Surfing is a sport that can be hard on the spine. When you are young, the spongy stuff between the vertebrae is flexible but as you get older it isn't so flexible. I'm 58 years old now. When I was young and out surfing
falling off my surf board was no big deal but over the years it could have contributed to spinal injury. That wouldn't explain all my symptoms but having all the spinal problems
I have I suppose could explain Transverse Myelitis which
I understand involves inflammation of the spinal cord.

[Redwings]

When I was young and out surfing falling off my surf board was no big deal but over the years it could have contributed to spinal injury. That wouldn't explain all my symptoms but having all the spinal problems I have I suppose could explain Transverse Myelitis which I understand involves inflammation of the spinal cord.

Hi Ed:
This is another instance where terminology is important. While it's true that a physical injury to the spinal cord can cause a large zone of inflammation that crosses the spinal midline and affects both sides of the body at the same time, an injury isn't considered to be transverse myelitis. "Transverse myelitis" is a term that's used for disease, not physical injury. In usage, it is not correct to say that physical trauma caused "transverse myelitis."

As I've said before, one of the challenges for your doctor is to try to differentiate the effects of physical trauma -- spinal cord injuries -- from the effects of a possible disease process -- transverse myelitis. Since the effects can be exactly the same, it may be impossible to ever establish true transverse myelitis or to ever tell the effects of the two apart.

In a situation that's already unclear and adding confusion to your diagnosis, it's important to not muddy the situation further by misusing the term "transverse myelitis" as a substitute for "spinal cord injury."