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Need Medical Advice

I have had Tolosa Hunt Syndrome for over 1 year now. Initial response to prednisolone, however still some symptoms; not in severe pain. On 15mg of prednisone for the last 8 months.
Is there a medical expert on THS?  (anywhere in the world).
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Expert on THS, I would be shocked if there was one, because with the expection of the Neurologist who told us about, each Dr we have come in contact with (including the Neurologist who is currently treating my husband) has never even heard of this......The only other treatment I have read about is radiation. My husband started having symptoms in June 2008 and started on prednisone in July of 2008. He is still on 40mg daily. He tried stepping down a few months ago by only 5mg and the pain started to return. His Dr wants to repeat the MRI (even though it has never showed anything), but first wants him be off prednisone completely for 2 weeks... we haven't attempted that yet.

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