It has been a very tough frustrating road. In 1996 I was walking down the hallway at work and just fell over to the left sideways and hit the wall. This started a chain of events that I will never forget.
I was sent to an ENT doctor who said I had Vertigo but NOT TRUE VERTIGO. While he was doing my exam, he noticed a problem with my eye. He sent me to an Ophthalmologist who examined my eyes and found out I had Optic Neuritis. I had a vision of 600/600. I had to put my face on the paper to sign a document.
I was started on high doses of steroids. I was then sent to a Neurologist who said I had a gait problem… everyone I saw was saying MS but none of the MRIs or spinal fluid test indicated that I had MS. I went to University of KY Hospital in Lexington, KY and was given a battery of tests there. Their diagnosis was possible MS. I was not satisfied, so I went to Cleveland Clinic and was given a battery of tests and they said the same thing: possible MS.
I was being frustrated and felt so lost. I was having all these problems and no answers.
I was this way for 6 months and slowing things started to get back to normal. I never thought another thing about it. I felt good things were getting better.
Then in mid 1997 boom it hit me again- only this time my Optic Neuritis was so severe I had to be hospitalized and given IV Steroids. The only good thing about this attack was that I was not having all the other problems I had before, but I did develop neurogenic bladder around this time. Things got better. I improved, but still no answers, still possible MS. MRI’s were not showing anything.
About a year after the second episode I had another milder attack. I was given more steroids orally this time. I was so tired and just wanted answers. I got better once again and years passed and I started having tremors in my hands and my neck hurting and loss of bladder control the whole time. I was wishing things would just get better and go away. No chance… I now have loss of nerve signal from the cortex of my brain to the tip if my toes. I have to areas in my back with problems my C 5-6 and C 6-7 and my T 5-7. I still walk with a wide gait and use a cane and am catheterizing myself 4 times a day.
I finally got a diagnosis this year, believe it or not. I went back to Cleveland with the problems and they did a battery of tests again on me. It came back positive on the blood work for aquaporin-4 IgG test. I was NMO. I now had a name to put to my problems after all these years: I had Neuromyelitis Optica Spectrum Disorder. Cleveland Clinic sent my records to my local Neurologist so I can begin treatment and I am praying the doctor calls Monday to get it started. Please pray for me and keep my in your prayers and I will remember you all.
Thanks for hearing my story…
Melissa Gail Smith 49 years old. Greenup, KY