Ramsay Hunt Specialists?

My poor mother has had Ramsay Hunt for a year and has deterioted and is in Hospice. Neurologist callled it Bells Palsy so did not treat her until prompted DAYS late after family suggested Ramsay Hunt and pointing out the blisters. (after reading up on it on the internet!) Then an ENT confirmed this. Since then she has been hospitalized, rehabilitated, after losing abikity to walk, has been confused and just want s to slepp---all songs of complications. Yet doctors say it must be strokes (Ramsay hunt mimics strokes in MRIs and the clinical complicatiosn are those I listed (Limb weakneess).

I have read this on the internet but again CANNOT find doctors who have a clue aboiut it. I would sugget Mayo Clinic or Johns hopkins but how do you KNOW it they have phsicians trained to recognize it and treat it (id there is even treatment) I'd hate to travel with this very sick woman to a distant clinic if they are also ignorant!!

[AndyVinerSeiler]

It's true that a lot of doctors don't know about Ramsay Hunt Syndrome, & it's a tragedy. Can't you call around your area to neurologists, pain specialists, etc. & find out who does? Until such a doctor determines that it IS RHS, I'm not sure you can be so certain that this is what it is, but you are certainly right to question your doctors. Mine misdiagnosed my illness until I was near death & in the E.R. -- and I was in my 40s at the time.

[hippichicjes]

RHS does mi mic a few other conditions/diseases, and many Dr's do not know about RHS enough or even at all. I agree w/ Andy - call a neurologist. Definitely do your homeowrk and research, take notes and demand answers !! I have been to over 30 doctors, and only 4 knew what RHS was...sad, but true. The first thing they tested me for was a stroke...they also thought Bells Palsy....I even had one  dr tell me I had Impitego !! I was only 25 when diagnosed and I also could not walk. I used a cane for over 8 months. Then I went to Gait Therapy for a year. I wish your mother the best of luck.

[lelectra]

Could eithr of you please tell me where you are and who tour doctors are> She was diagnosed by ENT who then referred me to 2 neurologists who knew nothing! Keep ignoring ENT's diagnosis.