MS/transverse myelitis question

[Refetk]

Does anyone know if there's research to indicate which of the four forms of MS a transverse myelitis patient is most likely to have if and when it presents? Or any stats on percentage chances of a TM patient presenting the various phases of MS?

Relatedly, if a TM patient experienced very strong and quick recovery from an acute attack (six weeks) before then regressing and presenting more TM/MS symptoms (roughly another six weeks) does that suggest what type of ms might present if/when it does?

[Redwings]

Hi Refetk:
Your question assumes that a diagnosis of MS has already been made. You left out of your post the evidence that the case you’re referring to is, in fact, MS with an episode of TM. This is an important point to verify because MS is only one of numerous causes of TM. So, without proof that the TM is truly related to MS, your question can be answered only hypothetically. The information you presented is too vague to reply to any other way.

And even if the case has been shown to be related to clinically definite MS, it might still be answered only hypothetically. The terminology that you used – “phases of MS” – shows an incomplete understanding of the actual forms and phases of MS.

In my many years of research, I haven’t come across research that addresses TM in a percentage relationship to forms or phases of MS. There might be some, so I’ll have to leave that to another respondent who is familiar with the research.

I can, however, base an answer on how MS works. The mere existence of a lesion that’s sufficient to cause TM can’t indicate which form of MS is involved. It’s the nature of the lesion that might reveal the form, and even then there’s a gray area. A degenerative lesion is more likely to be one of the progressive forms. An inflammatory lesion is more likely to be relapsing-remitting, but might also be one of the progressive forms. Without knowing the nature of the lesion that caused the TM, it’s impossible to even venture a guess about which form or phase of MS is involved.

The second scenario you presented is a little easier to address. If a TM patient experienced “very strong and quick recovery,” the relapse-remission cycle indicates a relapsing-remitting form of the causative condition, whatever that might be. (The reappearance of more symptoms later doesn’t necessarily indicate another “relapse,” or if the condition is even MS. Again, more specific information is necessary to address the question.)

By definition, “recovery” rules out the primary progressive and progressive-relapsing forms of MS. Percentages of “what phase it might be” don’t even apply if the history already rules them out. That leaves only relapsing-remitting and the inflammatory aspects of secondary progressive MS. Again, I’ll leave it to someone else to provide a source that attributes percentages.

If there have never been any indications of MS before the occurrence of TM, that indicates that 1) the form is probably not secondary progressive MS because secondary progressive takes 10 to 20 years to develop, or 2) the causative condition might not be MS at all.

If you can provide more information about this case that supports a diagnosis of clinically definite MS rather than any of the other possible causes, it might be possible to provide a more specific answer.

TM very complicated illness

I used to belong to TM club. I have had something like it and the results thereof. Here is a link that will show you some interrelationships between TM and MS, etc. It is quite complicated. It is becoming more obvious to me that there are lots of causes and lots of variations of all these illnesses.
http://www.myelitis.org/tm.htm

[Refetk]

Thank you so much for the impressively thorough answer to my posting. And please accept my apologies for not being better versed in the necessary language and information that would better explain the situation.

Here's a bit more info: I suffered an acute attack on aug 12 that was diagnosed as idiopathic TM. It presented with high fever (103.2), intense headache and urinary incontinence. Within hours I was paralyzed below the chest, with no bladder or bowel control/feeling whatsoever. Original MRI showed inflammation in several areas, but post steroid/ivig showed spinal swelling reduced, with some remaining edema in t4-5 area. Signal interruptions in thoracic areas were gone by subsequent mris last month.

PT began a week after treatments, with feeling and strength steadily returning in legs and trunk. Bowel and bladder feeling also substantively improved, though both were still dysfunctional (I cat 3x day). Left hospital in six weeks walking w cane, and short distances (several blocks) on my own.

Made steady strides in October, particularly in pt/leg strength/walking, but then problems: skin sensitivity spread rapidly from chest down. Banding and leg spasticity became daily problems. Regression but not total loss of bladder/bowel. Several utis(but no fever),
excruciating lower back pain. Tingling on arms, neck, face.

New mris on both entire spine and brain are clear - 'grossly unremarkable' in one doctor's report.

I felt none of these things when I left the hospital.

New mris on both entire spine and brain

[Redwings]

Hi Refetk:
Thanks for the update.

"Transverse myelitis" has a couple of meanings. It can refer to the phenomenon in which a large spinal cord lesion causes bilateral paralysis regardless of cause. But it can also refer to a unique entity, having the same outcome, that's due to a cause that isn't MS, such as neuromyelitis optica (NMO)/Devic's disease, another autoimmune condition or an infection.

Ideopathic TM is just that -- ideopathic. So any attempt to link it to MS -- especially any of the specific forms or phases of MS -- is premature. I think the most pressing question is, in determining that your TM was ideopathic, did you have the NMO-IgG antibody test to determine whether you might have neuromyelitis optica?

An article published on the site of the Transverse Myelitis Association (www.myelitis.org), which doesn't even address NMO for some reason, says that one study found that less than 20% of those with normal brain MRIs at the time of TM go on to develop MS. Further, it says, "It is also suggested in the medical literature that patients with 'complete' transverse myelitis (which means severe leg paralysis and sensory loss) are less likely to develop MS than those who had a partial or less severe case."

Without any evidence that you have MS, any answers about TM's relationship to the forms and phases of MS are only hypothetical and maybe not even particularly helpful.

My own case isn't particularly helpful because my cases of TM have been partial, not complete, and I have NMO, not MS.

I think you might get answers that are more applicable to your own history from the Transverse Myelitis Association (www.myelitis.org). They have great information there about TM and a forum where (like here at MSWorld) you can ask questions and get answers from more folks who have been through the same events that you have.

I wish you all the best and hope you can get the answers you're looking for. Please feel free to keep reading/posting on this forum, too. There may be more posters here who have better answers for you than I do.

[Eliel]

I was diagnosed with MS about 12 years ago after one bout with TM. I had a second one about 2 years later, a bit worse, starting from my toes and up to mid-chest each time within 24 hours. The major symptoms were numbness in both feet, legs, both arms, balance problems, a bit of difficulty with walking and just feeling weak and unwell. Neither time was I given early steroids because the first time was before an actual diagnosis and the second I had moved and the new neuro was a jerk.

The TM resolved after oral steroids for a couple of weeks, and took about 6-8 weeks, leaving me with permanent paresthesia in both hands and lower arms. I have not had a serious exaccerbation in years and I am no longer on dmd's though I used Avonex for two years.

In my family, my mother was dx with MS in her late 30s, my only sibling - a sister, in her mid. 30s, me in my late 40s and now my son at 29. My earliest symptoms were eye inflammation which can be a precursor to MS recognized later..

[kellijo]

I can only tell you my experience. Take from it what you will. I'm not a huge statistic type person. As I have trouble remembering what I had for breakfast most days. LOL

I presented first with TM. It was complete. I had severe weakness in both sides up to my chest. Spent 5 days in the hospital on IV steroids then the oral taper down for 2 1/2 weeks following.

Never fully recovered though could walk and funtion on my own and back to work. Numbness and tingling lingered.

About a year following I was diagnosed with MS. That was about 8 years ago now.

The original TM lesion still flares when I have an MS flare so it is not totally gone and I can really tell when that one wakes up to say hello.