Who knows about Ramsay Hunt Syndrome?

I have Ramsay Hunt Syndrome.  It is a complication of shingles.  Darn near everyone knows someone who has had shingles.  Same is true of people with Bell's Palsy (one of the symptoms of RHS).  Yet I have yet to find ANY medical professional truly knowledgable with this illness.  Have seen an Internist, Opthamologist, ENT, physical therapist and a Neurologist.  Had eye tests, audiological test, ENG, MRI, EEG, blood tests, the whole nine yards.  I am as cluless now as I was 23 weeks ago when this started.  No one is sure of the symptoms or how to treat it, how long the symptoms I have will last or if they will ever go away.  I am trying to find someone who knows of someone in the medical world that really,  REALLY, has had experience successfully dealing with this illness.Any suggestions?

[wyleecahill]

Well, since no one has answered, I guess I can answer my own question......No one knows a damn thing about RHS AND no one wants to admit they know nothing.  So nice that ALL questions are answered on this web site.  NOT.
Hope y'all get the help you are looking for.  I know I will, just need to do it on my own, still.

[Lauri8967]

Hey Wylee -
Im not a doc, but I would think the best doc to go to would be an infectious disease doc.  Shingles is a form of the varicella-zoster virus, a form of the herpes virus.  The docs that usually specialize in this area are infectious disease doctors.  Maybe that would be an option - to look for one in your area?  
Sorry - not alot of info, I know.  I hope you find some answers soon..
Lauri

[lelectra]

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 wants 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 (also Limb weakneess, fatigue etc).

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!!