Approximatly 6 years ago, I awoke one morning and could not get out of bed because I was so dizzy. When I finally managed to get up, everything spun, severe nausea, and I could not walk in a straight line. This lasted for 6 months. They did thousands of tests and finally sent me to University of Miami. By that time I was getting better and they didn't know what was going on. I returned to work but, continued to have strange episodes of disorientation, strange visual phenomenon. I was never my old self again. I would have spells and they would do MRI's, MRA's, CT's, tons of blood work. I was also experiencing increased migraine headaches and continual blurred vision. I missed very little work because I couldn't afford to be off. 3 years ago, I again awoke dizzy. Similar to the time before yet different. Again, started seeing dr's, and they did all their tests and could not figure out what was going on. During this particular episode, I also had severe dementia and my speech was affected. I had times when I could not remember how to walk. This lasted for 6 months and they finally started sending me for physch evaluations, one dr said that I was crazy and another one said that there was nothing mentally wrong. After 5 mths, I started to improve and at 6 months, returned to work, but was never the same. Last year, I had cataract surgery. I went from diagnosis, to correction with lenses, to must operate within 3 wks. The surgery went fine, but within 2 wks, my other eye started having problems and I was having spells of disorientation. I went to the ER with disorientation, speech irregularities, severe photophobia(this had been developing off and on) irregular gait, etc. Again, all tests looked great. They thought I had had a stroke but, nothing showed on their tests. I insisted to be sent to a teaching hospital. I was sent to Shands in Gainesville. I was diagnosed with Disabling Migraneous Aura and severe sleep disorder. I have continued to battle with this for 18 months. I am now housebound and when I do go out for dr appoinments, I have to use a walker due to weakness. I have not responded well to the modes of treatments they have tried. We are constantly back to step one. It is very discouraging and I don't know how much more of this consistant pain, living with basically no outside communication,(all my family live away), and with a darkened house 90% of the time can go on. I now have an appointment to return to Shands next month. The dr there stated that I may have been misdiagnosed too long for them to be able to do anything. Unfortunatly, there has been very little research done on this rare and unusual condition and most dr's just scratch their heads. My primary physician stated, told me, you are living in limbo and no one knows what to do about it, until something changes or the aura breaks on it's own, there is nothing to do. I am extremely saddened by this whole turn of events. I have been in the medical field in one aspect or another most of my adult life. I do understand that there are some things that are puzzling. Dr's are only human!!! Thank you for letting me tell my story. I realize that it is long, however, I have honestly just gone over the high points. There is much, much more but, maybe another time. Does anyone have any suggestions? Just some friendly encouragement might be helpful. I will let you know what I find out when I go to Shands next month. Probably nothing. That is what has been going on since June of 05. Bless you all.Reply Follow This Thread Stop Following This Thread Flag this Discussion
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