I have been lurking around the forum for a month or so and have yet to introduce myself. So here goes... My name is Niki and I live in the Midwest. I got very sick in early June 2007 and then got a numb pinky finger and L'Hermittes sign within a few weeks.
I had an MRI in late July, which found 4 spinal lesions (mild enhancement). I had a brain MRI in October, which found "several periventricular white matter T-2 weighted hyperintensities with a callosal lesion seen." None of the lesions were enhancing. I also had a lumbar puncture, which found oligoclonal bands (number not noted), an IGG Index of 1.44, and IGG Total CSF of 10.5.
My symptoms progressed quickly and now I have a constant buzzing sensation like I'm sitting in a vibrating chair all the time. My teeth actually chatter. When I workout, my legs shake like crazy. My right hand and left side of my face are completely numb. The dexterity in my right hand is worsening. I get left arm pain and right leg pain. I get an "icy hot" sensation in my upper arms and thighs from time to time. I have had a few days where I could not lift my arms because they felt so heavy. My balance is worsening and I misjudge the wall when I turn corners sometimes. My reflexes are very hyper.
I take Avonex and doxycycline, as well fish oil, b-12, and d vitamins. I still work full time, but recently I have noticed that my memory is slow.
I love my family. I love my job. I love my life, but I feel like I'm on the edge about to fall off sometimes. For a person who has always been healthy and active, my MS diagnosis hit me like a ton of bricks (as I'm sure you can understand!) I thought MS was slow to progress, but I have been getting worse since day 1, which makes me fearful of a very poor prognosis. I try to stay positive 99% of the time, but the fear creeps on the bad days.
QUESTION: I am waiting to see an MS specialist on June 23 (long wait), but until then, I have a question that perhaps someone can answer. Does anyone have a benchmark for the IGG Index or IGG Total CSF. I think 1.44 is quite high, but I don't know what that means necessarily. I have read conflicting articles about that number being an indicator of future progression and disability. Does anyone have some insight?
Thank you for all the interesting and informative posts...it has been very helpful to me since my diagnosis. I wish all of you many good days ahead. Best wishes!!! ~ Niki
Like Heather I am not knowledgeable about most of the chemistry. But still I have a some questions: What sort of doctor gave you your diagnosis, when did it happen, and why didn't they start you right away on a drug regimen? If you have a clear-cut diagnosis, then that neuro should have taken the ball and run with it right away. Absolutely see the MS specialist (or better still find another one who doesn't make you wait 4 months), but meanwhile go back to the other one and ask for action now. You're a perfect example of why one of the drugs should be started immediately.
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