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Limbo update December 2014

Dec 22, 2014 - 2 comments





Multiple Sclerosis




lumbar puncture



Because I'm too tired to re-type ... posting a link to my blog with the results of my most recent appointment.  I'm still in limbo, however things are now moving forward despite my "atypical" mri.  At least for now -- not holding my breath that it will continue.  I'm finally being sent for a lumbar puncture.  After that, who knows?

This was follow-up to June 2014 assessment, new mris, few more mimic tests and rule-out of ALS, and an awful two month episode involving walking/bladder and bowels and many ER visits.  ALSO an incidentally found bladder tumour found while investigating retention -- NOT EVERYTHING IS MS!!!  It did NOT involve my right hand -- I may have permanent issues with that.

Be strong to all of you out there running the limbo race with me! <3

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5112396 tn?1378017983
by immisceo, Dec 23, 2014
Perplexed by a neurologist that would say 'well beyond CIS' but not diagnose MS. I was not aware of a stop in between! So sorry you missed dinner, but delighted you and your husband toughed out the appointment. I do hear your frustration. I sincerely hope you get your LP appointment schedule for earlier than April. I hope you're able to enjoy the holidays with family even with this in the back ground. Chin up. Sending you good thoughts.


5265383 tn?1483808356
by aspen2, Dec 23, 2014
Imm, I believe what he is saying is that he needs absolute proof that my lesions are ms plaques and not something else.  True, there is nothing really left.  He has a reputation for being very thorough (read cautious and slow to diagnose).  So although my flares "look" like ms, and there have been 5, with symptoms in different areas, he still is dealing with this mri which doesn't scream ms to him.

I also have NOT had optic neuritis (eye involvement was 4 months of double vision).  I don't have l'hermittes.  They have not seen spinal lesions or brainstem lesions (although I've had relapses that should have shown lesions in both these places).  However, mris haven't been done during relapses.  Can lesions disappear?  Quickly?  I don't know.

I've learned patience.  At least there is movement in some direction now.  He seemed very positive that he will figure this out; that is enough.

Thank you for your good thoughts, Imm <3.  I appreciate them.  Have a lovely Christmas!

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