Have I been misdiagnosed?

an inflammatory disease of the central nervous system in which there are episodes of inflammation and damage to the myelin that almost exclusively affect the optic nerves and spinal cord. A rare disorder which resembles multiple sclerosis (MS) in several ways, but requires a different course of treatment for optimal results.

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Have I been misdiagnosed?

Postby Dejibo » Sat Feb 25, 2012 5:29 am

I was diagnosed with MS years ago. I have had symptoms since 2001 but was not diagnosed till 2005. I have had a gaggle of MRIs since then and they all remain the same (brain not spine) Based on my symptoms, and my lesions in the periventricular area of my brain along with an attack of optic neuritis in 2001, it was decided that I belong in the MS lane. I took their drugs, they were awful for me. The interferon made my liver go crazy, and the copaxone was just an awful drug to take. I felt terrible all day everyday.

recently I had yet another attack of ON and was sent to the big girl hospital about a week after it started (i was bad and didnt seek help right away.) instead of 3 days of IVSM I was given 5 and I was told that both of my optic nerves were cupped, paled and reactive to optic neuritis. I did an evoke potential but only the left side showed up as abnormal. My vision did not go black, but dimmed to 20/400. It has remained there for 8 weeks now. I saw the eye surgeon last week and she told me that the optic nerve looks great now, and she expects me to see some improvement in vision. I am using dragon naturally speaking as well as other computer programs to help me on the web. The association for the blind has been wonderful. They have come to my home and really dragged me around helping me to orient with such poor vision.

I don't have the typical symptoms of MS. I occasionally drag my left foot, but I don't seem to be reacting the same way other MS patients on other message boards speak of.

I have constant hiccups
I have constant nausea
I have a constant headache
I have moments of spastic behavior that only last a minute or so.
I have not lost control of my bladder, but my bowel needs help to work. (very slow)
I have had 3 attacks of Optic neuritis in the last 10 years.
I am positive for secondary sjoghrens disease of the eyes. funny, tho not the mouth.

Is it possible that I have been misdiagnosed? Do I really have Devics or TM? I hate to be one of those that show up and say "what do you think?" but...im confused, im scared, im now scratching my head, and wondering if I fit in this other corner at all. I have spent all my time and effort wondering if this is really something else and not MS.

opinions welcome.

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