Hi my name is Rosie i have been fighting for a diagnosis for so many years now i forget. It started in 2004, when i was really ill, eye blurry, vertigo, awful UTI, extreme tiredness and i was off work for 6 months. When I eventually went back to work i had the weirdest symptoms, out of balance, dropping things, pins and needles, tingling, and eye pain really bad, and I went blind in one eye for a few minutes which freaked me. I did see a doctor but he just said it was all stress of my job (teaching).
As my symptoms got worse in 2008 saw the neurologist I paid. I had all kinds of tests MRI, etc, and a VEP test. The vep test came back abnormal in both eyes and I was told I had Optical neuritis bilaterally. Still no diagnosis, even though there were lesions found on my spine (one).
Basically I gave up trying to get a diagnosis as it was simply compromising my health and welfare. I have lost mobility, I have terrible spasms in my left foot which makes my toes curl up in pain, and pins and needles, UTI, vertigo, fatigue, tingling and balance issues. In between 2008 and now i have had two more MRIs and overall there have been 3 lesions found on different dates and areas of my spine. Still no diagnosis.
About 3 months ago the neurologist sent me an appointment which i was surprised by and I went to see him. We had a long chat and he said i do have MS symptoms but they are just not quite fitting. Anyway he decided to order another VEP test, which i had done.
As i never heard anything after this, i just assumed it was all clear, and to get on with things.
Then yesterday in the post i had two letters from my hospital. One was an appointment for the neurologist, and another one a short letter from him, saying the VEP test showed abnormalites which is what i had before in 2008, and he wanted to see me to review these findings.
Weirdly enough at the time of the test i was having eye pain and burning.
Could this result now be the key to a diagnosis. I would have thought the ON showing in 2008 at 117, in one eye, would have now resolved itself, in actually fact i was convinced the test would be negative.
So I wonder now if this is a new delay and showing activity going on. I have been poorly of late with terrible spasms and cramp in my left leg, and other issues.
I know i darnt even think about it as i will just get down again, but surely with ON probably twice, 3 lesions, and clinical findings on neurological testing this could be it… my neuro has said I definately have an inflammatory disease.
Just wondered what any other peeps thought.