I was diagnosed with CLIPPERS twelve years ago by Dr. Elizabeth Schubert at Mayo Scottsdale, who had several CLIPPERheads under her wing. Moved to Florida a few years later, and there was zero knowledge of my disease there. I ended up under care by a gp, since there was apparently nobody in Tucson who treated this. I have ataxia, diplopia, double-vision, laughable balance, periods of whispery voice and cramped handwriting. My condition was not treated for what it was diagnosed originally. One neuro said I would get better or worse.
Been on pred for twelve years, what a joy. Trying to diminish dosage from 10 mg. We shall see. My present doctor is scrambling to find someone with knowledge and experience, but, quite frankly, as rare is this disease is, it will be like looking for a needle in a haystack.