Mild Transverse Myelitis ? MS ?

[karindel]

Hi

July of 2007 after an extremely intense 3 hour aerobic class I went home and realized I had numbness and tingling in both my arms and legs and feet.  Had a brain and cervical spine MRI in August and all was clear.  However, the tingling in my feet has continued to this day.  I am so used to it that I don't even notice it.

March 10 of 2008 extreme mid back pain woke me up out of my sleep.  Three days later I started feeling weird numb sensations on the inside of my right thigh which slowly progressed over my knee and down my calf to my foot.  This peaked around the 2nd week of April.  I would say it is around 90% better as of May 13.  During this time my right leg became very week and numb and dead feeling. I was unable to walk up stairs without pulling myself up the banisters and felt like I was on a boat that was docked. I felt off balance and uncoordinated.  I went to a vascular surgeon, thinking it was bad circulation, and orthopedic dr and finally a neurologist.  The neurologist did the standard tests and I could not jump up and down on the right leg and could not do a deep knee bend and my gait was very stiff.  He then ordered lumbar/sacral and finally thoracic MRIs.

The lumbar/sacral was normal. The thoracic however showed the following (from the radiology report):

Evaluation of the spinal cord demonstrates the presence of a small, approx. 4 mm region of abnormal intramedullary T2 prolongation effect involving the right dorsal portion of the spinal cord at the T10-T11 level. The singal cord maintains normal size. Although nonspecific, this finding may represent a solitary focus of transverse myelitis.

IMPRESSION

Transverse myelitis is suspected. Further clinical correlation recommended.

During this time I also had the EMG/NCV tests which showed no peripheral neuropathies or compressed nerves.  

Today I went back to the neurologist and told him I was feeling better and after 9 weeks had returned to the gym.  I told him that after 10-20 minutes of aerobic activity my right foot started jerking around when I jumped up and landed on it.  It would not roll toe through heel smoothly.  It made jerky movements.  My podiatrist told me that this was called clonus and was a sign of MS.  The podiatrist was aware of all the numbness as this was present each time I see him.  I pointed this out to the neurologist and he was trying to evoke the clonus in the dorsiflexion position and said that there was some clonus but it was not over "5 beats" and was not severe.

His comment on the MRI was that he disagreed with the radiologist's report and that he didn't see any inflammation or it was so small as to be imperceptible.  He said that transverse myelitis is usually very serious and lands on in the hospital with severe disability.  He was not able to attribute any of my abnormal sensations to any one diagnosis.  He concluded I must be under stress.  I was so infuriated.  I felt like he was telling me it was all in my head.  Anyway, the other neurologist who did the EMG also saw report of MRI and told me that sometimes transverse myelitis is the first presentation of MS and it would be worthwhile to repeat MRIs in a few months and do spinal tap.  This one agreed to repeat MRIs but really feels it is nothing to worry about or just wait until another episode arises.

Well, now I am not satisfied with that conclusion.  I know stress is bad and manifests itself in different ways but this is ridiculous.  I would like to get a second opinion and possibly go to an MS specialist.  

I know TM is rare (like 1-5 in a million) but it seems that numb limbs are common for MS sufferers.

Karin

[Skinnyninja77]

Hi Guys have been reading all you comments..

Sounds like there are more people out there with TM than i first thought.
Long story short. August last year 2012 i started to develop numbness around my trunk as they call it and had weird sensations down my left side numbess, tingling, pins and needles, tiredness lack of consentration forgetfulness.. and ther urgency to go to the toilet a lot. thinking that i might be drinking to much tea.
So i thought this is not right and went to see my GP who was not sure what it could be and refered me to the nerologist..

After seeing her and explained she did various tests on me and said she thinks i have inflamation on my spinal cord. MRI showed inflamation on the spinal cord and brain but blood tests cam back negative.

So finally this month Feb 2013 i was told that i have TM they said that they are hoping that it will calm down and don't think treatment is needed but will repeat MRI in a few months.

They did say that it might be possible that later on in life that i may develop MS.. so this is still on going..

Kind regards

Kerry Hobbins

[Catsg79]

Hi Karin,

I have just read your post  and thought I was looking at myself in a mirror. It took me two years to get my diagnose of Recurrent Transverse Myelitis....I went to many , many doctors. After I couldn't feel anything from my belly button down my toes, and therefore couldn't walk they decided to make me a thoraxic MRI and my lessions showed up D6, D8 and D9. Now I've been going through a lot of tests to see which other illness is hiding behind TM. But eveything shows negative except for my blood work: positive ANA and Positive anti RO. My lumbar punction showed mild linfositosis and hematies. I just keep a strong hope that there is no other illness hiding, just an idiopathic recurrent transverse myelitis. Fortunately, I recovered in a 95 %... I can do a normal life. I want to send you all my best wishes and hope, I understand perfectly well what you are going through... I was told it was stress for over a year.... until I stopped walking! but I am glad you are going in the right lane.... which is to investigate what is going on.
Best wishes,
Cat SG

[Momzilla]

WOW!  How hopeful!  We may need to rethink this one for the bonfire!

He sounds like he's on the right track after a little detour.

Please let us know how things are going, and keep us updated.

Feel well, Karin!

Zilla*

[karindel]

thank you for all your responses.  I'm typing fast as I'm doing this on an iPhone.  Dr just called and said he wants to do vep and ssep after thinking more about our visit.  So at least he is doing something. After I get results I am going to an MS specialist in NYC as I am only 32 miles away.  Hopefully this will show that I am not a stressed out hypochondriac.  


Karin

[Quixotic1]

The 2nd neurologist is an imbecile!  Do not go anywhere near him again.

From what I have read your course is not terribly consistent with transverse myelitis, but I will confess to not knowing a lot.

However, the workup for TM is essentially identical to that of MS.  Also, TM, as you noted can be it's own illness (idiopathic TM) or associated with other disease, of which MS is the most common.  With that suggestion by the radiologist, you should have had a repeat MRI of the brain and cervical cord, preferably on the highest power MRI machine you have access to.  You should have had a spinal tap as soon as TM was suspected.  Tests of the CSF are part of the diagnosis of TM or TM associated with MS.

You also need a battery of bloodwork for the other associated diseases that can have TM as part of them.  These are very much like the MS Mimics.

Your clonus is indicative of a spinal lesion, and you appear to have one.  How interesting that the two should match.  The neurologist is an idiot!  Stress does not cause any of the symptoms you have descibed except possibly some numbness here or there.  Saying that what you are going through isn't severe enough is like saying that none of us can have MS because we are not in wheelchairs.  It is absurd.

Because TM is often part of an MS-like illness called Devic's Disease or Neuromyelitis Optica, you also should have had a VEP, a Visaul Evoked Potential.  This is to look for signs of optic nerve damage.  If it is seen, with TM,  the proper treatment is IV steroids.

Basically, it doesn't seem to me that either neurologist is being aggressive enough in your diagnosis.  Did I mention that that neurologist is a defective dodo of a "maroon?"

Your are correct in feeling like you are in Alice in Wonderland.  A dense dimwit has dismissed an MRI finding that matches the symptoms you are having.  Another has done an incomplete workup, suggested MS and told you to come back in a few months.  No wonder you're on the internet looking for answers!

Oh, and Welcome to our Forum!  I am Quix, the local physician (not a neurologist, but able to read the medical literature along with them).  No one can diagnose anything online, but I would really like to see that you have had the appropriate work up for what has gone on NOW.

Again, what you need now is

repeat MRI of brain and cervical cord
spinal tap
VEP
blood work for causes of TM and for mimics of MS

I hope this helps.  

Quix

[Momzilla]

Oy!  How frustrating.  SOunds like you need a new doctor, and we've have our first neuro ready for roasting for Friday.

What a dweeb!  Stress does NOT produce clonus.  It does NOT produce abnormalities on your spinal MRI.  Period.  I am continually perplexed as to why some neuros are so loathe to consider MS (or TM).  'Perplexed' doesn't even cover it.

And to say your symptoms are caused by stress is insulting.  Not that stress doesn't do weird and powerful things to us, but it certainly isn't causing what's happening to you.  

The clonus you have makes me think that you must have some degree of hyper reflexes in your limbs.  Has anyone told you you do?  Clonus is a sign that something is definitely wrong in your spinal cord, your Central Nervous System.  And for him to have the evidence in the form of a radiologist's report, and to deny that the abnormality is causing your signs (of clonus or hyper-reflexia) is absolutely ridiculous.

We've got to get you to move on to someone who will take a better look at you.  Have you had a proper neuro work-up?  One which lasted a sold half hour at least?  

I'm firing up the bonfire for Friday.  Who's bringing marshmallows?

Take care and let us know how things are going.  And ask around for a GOOD neuro.

Feel well,

Zilla*

[hbananas]

I, too, have a dx of mild TM.  Mine started last fall with left-sided numbness in the torso, grew to include hands and feet on both sides, then settled down to mostly the left.  I have some punctate lesions in my brain that the neuro agrees with the radiologist are probably blood-pressure related, but I have lesions in my cervical spine at either two or three levels, depending on which MRI you believe.  Have had negative VEP, LP, EMG/NCV tests.

My amateur research into TM says the "transverse" part of it means it goes across the whole span of the spinal cord--everything below that level is affected.  True idiopathic TM is very very rare.  TM as a first attack of MS is less so.  The milder forms that affect only one side or at least one side more heavily is more likely to be MS related than the classic severe kind.  If you have later MRIs that show new or enhancing lesions, or if you have a LP that shows elevated iGg index or oligoclonal banding, or if you have lesions show up in your brain, or if you just plain have a relapse of symptoms, that will push it to the MS side.

How's your heat tolerance?  I've decided this will be my year to get out there and see if I get dizzy in the heat like I did last fall.  My numbness and tingling mostly went away after a few months, but it's back in a minor way right now, and I'm feeling more tired for no good reason again.

It's good that one of the neuros wants to repeat some tests, especially since you have the clonus and gait problems.  The waiting game is hard, for certain.  Is your cooperative neuro open to doing the LP sooner than later?  Oh, and has anyone offered you IV steroids to see if your symptoms go away?  If you have a one-shot bout of mild TM and you get well, you're done!  If you have enough MS-ish stuff going on to diagnose it, starting treatment with the disease-modifying drugs right away will be better than waiting for another attack.  The resident experts here will tell you that the lesions that haven't grown big enough to be seen on MRIs are already causing problems, and the sooner you stop or slow them down, the better off you'll be in the long run.

OK, now the people who REALLY know what they're talking about can respond.  Best of luck.

Holly