transverse myelits? MS? or other?? any insight?

[rose1240]

My fiancé is going through mix diagnosis and was hoping someone could offer some insight.  Like most here, she has a long medical history but here is the short version, 2005 diagnosed with Lupus, 2 years later had several lesion in the left temporal and corpus callosum, 5 olgi bands in spinal tap.  She was then diagnosed with MS and Lupus.  8 months later had no feeling below her knee and was treated with IV Steriods and IVIG.  Was dx with Transverse myletis in addition to MS/Lupus.  However, the MRI’s revealed one lesion in her spine and zero in her brain.  Several neurologist reviewed the records and were confused now with the MS dx since lesions don’t disappear.  3 months later (this month) she had no feeling in her feet and was again treated with IV steroids for 5 days..still no feeling.  No new lesions on the MRI were found.  Dr’s are saying they are leaning towards MS..but still not sure.  Has anyone else experienced this?  We may seek yet another opinion at the Mayo clinic or MS center.  She is currently on copaxone for MS  and cell cept for Lupus.  Any help woudl be greatly appreciated!!  Thank you..Dan    

[sllowe]

Hi Dan,

I'm glad you are doing your research.

To recap:
-several lesions in the left temporal and corpus callosum
-5 olgi bands
-transverse myletis
-lesion in her spine

Like Larua says, lesions can remyelinate.  The DMDs can facilitate this, especially the Copax. Do you know what size they were?  

If it were me, I'd re-ask the Drs about their thoughts on why they felt hers could not repair.  Maybe they are saying this based on the size and extent of the 1st ones or something, I just don't know.

Ok, last question (sorry).  Was the imaging done at the same exact location with the same exact strength machine? Asking this because of quality of imaging and machine strength.  Our Doc Quix wrote up a thorough piece on how MRIs show lesions that I think you will enjoy.  It's in our health pages located toward the top right hand corner of the page.

Thank you for coming along.  I hope your fiance gets the feeling back in her leg.  How long has it been since the steroids? Maybe they will kick in soon.

See you around,
Shelly
p.s. definitely gather up her records for the 2nd opinion...

[Lulu54]

Hi Dan,
She is lucky to have you working through this mystery with her - this MiSerable disease can be a real bear to figure out.  And it tries the patience of everyone involved.

The main thing about an MS dx is the clinical history of her disease and it absolutely sounds like MS to me, but I'm not a doctor.  The corpus callosum lesions usually are classic MS location, but can be other things.  5 unique o-bands is also pretty telling.  

The neurologists who looked at her MRI's should know that lesions come and lesions (often!),  The body is an incredible machine when it comes to healing itself, and that includes the myelin deprived lesions.  Her body may very well have patched those bad boys.  

BUT the thing about repaired Myelin is it is never as good as the original and it often has faulty transmission capabilities.  So it may look normal on the MRI, but work less than 100%

I'm happy to read that she is on treatment for the MS - don't let them stop that without a very good justification and solid evidence.  The dmd's are the best line of hope we have to work in the background to slow the progression of the MS.

As for Mayo - you might want to read the comments here.  Most are less than complimentary and in fact, we have a  favorite condiment order - HOLD THE MAYO - that is used quite often.  Their criteria for dx'ing MS is out of step with the rest of the world.  To us it appears to be a $$$ decision as to why patients have to have so much more proof of MS before the Mayo docs will call it MS.  This flies in the face of FDA drug approvals that say DMD's should be started at the first sign/hint of MS, because it can slow the disease process down.

The neuros at NYU have been helpful with the hard to dx patients here and you might consider going there if at all possible.  Cleveland Clinic has mixed results - they're great with heart and cancer, but the verdict is split about their MS care.

You have some great teaching universities on the east coast, including in the Carolinas and maybe someone could recommend a doctor there - that would be closer to home for you and your fiance.

I hope some of this helps - feel free to come through anytime and question all you want.

my best,
Lulu