Waiting for more lesions?

[COBOB]

I'm being followed at the Rocky Mountain MS Center w/ a DX of "Demyelinating Disease" at this point.

48 Y/O Cauc Male c/o sensory issues mainly in Right forearm/hand and both feet/lower legs.  Pain/sensation is described as burning in nature.  Physical position, cold packs, opiates do not relieve pain.  Heat seems to make arm/hand pain worse.  EMG/NCS R arm/shoulder not remarkable for ulnar nerve pain as described but positive for medial nerve entrapment consistent with Carpal Tunnel. C/o balance issues: Positive Romberg.  Falls (particularly in dark rooms where I don't have visual queues.)  Loss of balance particularly  climbing stairs.

DX  2005   Adult ADD w/ Impulse component (Cognitive Change at age 42?)
DX  Apr 2010 Optic Neuritis OD with Positive VEP (decreased Conduction Velocity and Amplitude OD)
--TX 1GM Methylprednisolone 1 Gm QD x 3 days pretty much resolved over a 6 week period.
MRI (1.5T w & w/o GAD) Brain and C-spine.  1 - T2 non-specific R parietal white matter lesion.
Jul 2010  LP - 0 OCB (Univ UT Reeference Lab) Elevated Monocyte count in CSF
DX Aug 2010 Trigeminal Neuralgia R  CN7   TX  Carbamazepine 200 mg BID

Plan: Watch and Wait.  MRI (3T  w/o & w/ Double Dose GAD MS Protocol) in Nov 2010.

Maybe I'm seeing this the wrong way, but I seem to have had some demyelination of Cranial Nerve 2 (CN2) then 3 months later another demyelination of CN7.  They have ruled out most of the the other causes.  I think they are waiting for a higher lesion load, but I think that demonstrates dissemination in space and dissemination in time.  I think this Nuero is just looking for more evidence.

Sometimes I can't trust my thought processes so I figured I'd run it by the group

Hope you can comment.

[Quixotic1]

Hi, and a formal welcome to the forum.  I hope this is a place where you land and stay, because you clearly have a keen understand of neurophysiology and, heehee, you seem to see things my way.  Okay, I'm narcissistic like the docs we often talk about.

I hate to hear this about the Rocky Mtn MS Center, because my impression was that they were a cut above.

I also do not like hearing that some is being followed for "Demyelinating Disease - Not-otherwise Specified.  I have looked up this diagnosis and it seems to include what used to be called the variations of MS, but some of the entities are now known to be separate disorders.  These are Transverse Myelitis (you don't fit), Balos Concentric Sclerosis (very, very rare and usually seen in people of Asian descent), Marburg's Variant ( Not - you are still alive), Neuromyelitis Optica or Devic's Disease, and a couple others.  From what you have told us you don't fit in with any of these.

Okay, since you clearly understand the requirement to have Dissemination in Time and Space.  You have had at least two attacks of symptoms separated by a stable or improving period of at least 30 days.  We only have to look at the Optic Neuritis - a problem of demyelination in CN II  plus you had the episode of Trigeminal Neuralgia showing involvement of CN V.  That "could" be considered too close to count, so we have to look at the sensory problems in the feet and arm.  I can't see that a single lesion could cause both of these, so I would gladly count these as separated by Space.

I gather that the pain in your forearm correlates with the distribution of the ulnar nerve, so it does not seem to be explained by the EMG findings of Carpal Tunnel involving the median nerve.  I do know that Carpal Tunnel "can" involve the ulnar nerve, but much less often.  Also, CTS can be felt as pain in the forearm.  So, I will have to leave the interpretation of that to the neuro reading the EMG.

The sensory problem in your feet you describe as burning.  That brings to mind the small fiber peripheral neuropathy like that of Diabetes.  Small fiber neuropathy is harder to diagnose.  Was the EMG of your lower legs negative?  If they have questions about whether the lower leg sensory problems are central o peripheral, my choice of test would be the Somato-Sensory Evoked Potentials - SSEP.  They do not have a high degree of helpfulness, but if they are positive that would nail your separation in space.  If negative they aren't much help either way.

Now you also have the balance and equilibrium problems.  These are a complex interaction of several cranial nerves, the inner ear vestibular apparatus, the eyes, the joint position sensors, and sensation mostly on the soles of the feet.   To determine whether this problem is central or peripheral the best tests would be done be a neuro-otologist and I'm sure the Center has access to a good one.  It's really important in the diagnosis and care of MS.  The tests which would help the most would be the VENG - Video Electro-Nystagmogram and possibly Computerized Posturography.

Your MRIs were almost identical to mine when I got diagnosed.  My sole lesion was in the right frontal lobe.  However, my diagnosing neuro was quick to point out that it ws ovoid, and with its long axis perpendicular to the ventricles.  What cinched my diagnosis was having the MRIs repeated on a 3T machine which showed 6 spinal cord lesions.

It doesn't make sense that they are waiting for November to do MRIs on a toally different and higher resolution machine.  If more lesions are there they will show now.  The 3T can pick up a good 25% more lesions than the 1.5T in back to back testing.  In my case the 3T picked up 600% more lesions, lol.

The LP - Okay so no O-Bands and did it give an IgG Index?  Also, what was the total White Cell Count.  If the count was less than 6 or so and most or all of them were monocytes, that is of no consequence at all.

So, it seems I agree with you that no matter what the ancillary testing shows, they are waiting for more lesions.  I wonder what their "cut-off" is.   In my mind the probability of this being MS is so high, that an argument can be made that DMDs should be started.  All of this is supposing that the rule-out has been through.  Since you are at a nationally MS recognized center, I would expect that it has been.

Have you stated that you would far rather be treated as early as possible if MS is really the highest suspicion on their list.  Do they even have a second or third possibility?  If not there is NO justification for waiting - in my mind.  And I have thought about this stuff A LOT!  If there are other viable possibilities, have them discuss them with you.

So, tests that could add more weight to the MS diagnosis are

SSEP of affected limbs
VENG
moving up the date of the 3T MRI.  That can be justified because they are moving to a more sensitive machine.

I hope this helps.  Really, it just reinforces your own thinking, which I thought was quite sound.

Quix

[HVAC]

It took me two years of tons of testing all negative for other diseases and positive for MS and a half a dozen Neurologists all saying it looked like MS before I was diagnosed with MS. Neurologists are sometimes very slow. Watching over six month intervals. The first Neurologist called it as MS but he left town after my first appointment, starting me on a roller coaster.

Someday they will look at the diagnosis process now and think man that was the dark ages of neurology.

Keep the faith

Alex

[Deb61]

I was in a six-month holding pattern with this diagnosis.  My guess was that my neuro was trying to figure out the type of MS if it was, or if could be Devic's, but this is speculation.  In the six month period, new symptoms emerged and were documented.  I was diagnosed the day of my second MRI, brought up on his computer screen monitor, when new lesions and growth of old lesions were found.