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In 1998, I was put in the hospital for double vision, headache, [...]

Posted by @kateej in Brain & Nervous System, Nov 23, 2014

In 1998, I was put in the hospital for double vision, headache, unsteady gait, sensitivity to light, and tightening in my jaws. A ct scan and subsequent mris revealed a brain abnormality. I was told I may have metastatic cancer. One week later they did a needle biopsy which was inconclusive. Then an open biopsy was performed. I had been in the hospital before the open biopsy for two weeks on steroid treatment. After the open biopsy the doctor said he couldn't see anything but he took a sample of tissue. The biopsy report from Virginia came back as demyelination consistent with MS. I went home but in the following weeks became worse with new symptoms. I couldn't concentrate, had many sensory symptoms, couldn't say things I wanted to say, etc... I was told it was anxiety. After about a month, I had my first grand mal. My MS specialist treated two different times in a year, about 2 weeks each time with high doses of steroids. I was put on copaxone for about a year until my insurance ran out. I saw about three different sets of doctors all of whom diagnosed the MS. I could no longer take the MS med because of expense. For about 7 years I was put on many different epilepsy medications, none of which stopped my seizures. Finally, I ended up in a hospital. I had an unsteady gate,double vision (which continues to this day), and several different cognitive problems (which also continue today. I was told in that hospital that my MS diagnosis was wrong. They put me on Keppra. The seizures did diminish to a degree, but the cognitive problems double vision and some of the sensory symptoms continued.
I began to fight depression, anxiety and made a suicide attempt last February and ended up in a crisis center last February. I am only alive because my brother came to my house. After all of this happened a friend in the medical field looked up Keppra. She said the side effects described me to a tea. I recently went back to the neurologist and he agreed changing my meds to aptiom gradually taking me off Keppra. I have been on it for about two weeks. I have had one seizure that put me in the hospital and am feeling weak and very tired. The seizures with all of the remaining symptoms from 1998. Has taken its toll on me. My MRI results show only what was there in 1998 and 99. Nothing new. I was 36 when this started and I am now 52. I want a better quality of life. I cannot drive and I live alone. No husband no children. I need answers. I need a dictor who will listen, look at the whole picture, and think outside the box. A ny advice or suggestions?????

Posted by @shawnbishop, Dec 2, 2014

Hi Kateej, Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 800-446-2279 Florida: 904-953-0853 Minnesota: 507-538-3270).


Posted by @kateej, Dec 2, 2014

Thank you for your reply.

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