February 2009

February 5th, 2009 -  A few days ago I began having problems with my vision.  My eyes would be a bit "goofy" when I looked out of the corners.  They would have trouble staying still.  In addition I was having bout of "almost double vision".  It's really hard to describe - basically for a split second my vision would go wonky.  Then I developed a headache with pain right behind my left eye and pain behind both eyes if I pressed lightly on them with my eyelids closed.  The headache has lasted for 4 days with some periods being much worse and others almost normal.  I finally called my Neurologist's medical assistant and relayed the information.  She had me do a couple tests with my eyes and said I needed to be on a course of steroids.  Yeah - my favorite :(

This time I'm on oral steroids - a 15 day taper.  I'm hoping it won't be as bad as the IV steroids as I receive a much larger dose that way.  Already I'm feeling the antsy-ness I get with steroids.  I should be in bed but despite taking a sleeping pill i can't relax.  SO I thought I'd update my journal.

Last year I had an MRI done in March (or May) I can't remember right off.  It showed no new lesions since the last MRI - which is good.  My neurologist is new (my favorite guy retired) and fairly aggressive in his course of treatments.  He wasn't happy with the Avonex and Copaxone combination and was pushing me to switch to Betaseron.  At the time I was about to switch insurance companies and would be without insurance for a month so we decided not to change anything until after my new coverage started.  Once my new insurance was in effect I met with him and he had decided that if that combination of therapy was working for me (and clearly it was as shown by the MRI) that I should maintain that therapy.

I had maxed out my out of pocket amount for my insurance due to a spontaneous left pneumothorax (collapsed lung) that required a 10 day hospital stay and an operation to repair my lung.  I asked if we could squeeze in another MRI so I wouldn't have to pay any extra.  He agreed and we did another MRI.  Unfortunately it did show a lesion that was not present during the May scan.  Odd thing was I didn't notice any symptoms although I might not have noticed them as much if it occurred while i was in the hospital on painkillers.

So now I'm starting my oral prednisone and hoping the side effects won't be worse than when I have IV solu-medrol.  I'm also going to make  another appointment to revisit the idea of trying betaseron and discussing the possibility of Tysibri.  It may be that I've developed neutralizing antibodies to the interferon and / or the copaxone.

We will have to see.

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Last modified: 04/01/09