Re: To Anyone - I'm a new member with lots of questions

[Guest guest]

WELCOME BARBARA.

I think you can find all that you need i n this group

I'll not very helpfull for you because i'm french and my english have to be improve I'm

44 i have four children and 3 with rp.Ben 11y, coralie 14 and nicolas 19 hopefully

24 is out of rp LOL.

bienvenue de France.

Marie-pia

[Guest guest]

Barbara,

I'm so sorry to hear of your troubles,

I too started with ear problems due to RP-but unfortunately, It took me 5 years to find a doctor who knew exactly what it was just by looking at it once.

By then it was too late, when I had found that doctor it was because I was already in the hospital (recovering from a relapse of my multiple sclerosis)

and had woken up one morning totally deaf. That's when an ENT looked at me & knew exactly what the problem was.

I was treated with large amounts of steroids (not prednisone, but Solumedrol by IV) eventually the flare of my ear went down but the damage was done, after some time (approx. 6 months) I did regain 80% of my hearing in one of my ears (thank the lord for that) but the other ear is totally deaf due to repeated attacks of the RP, I did have some (very little) throat involvement and was on Daypro for about a year, then was weaned off of it due to the fact that I was showing no symptoms of the RP.

So, to finally answer your question, I do believe that one day you may be able to get off the steroids completely but everyone's course of this disease runs differently.

I was lucky I "walked" away with partial hearing loss & nothing else as of yet.

I wish you luck.

Have faith.

[Guest guest]

Barbara,

By the way, I was a relatively healthy 28 year old when this all happened.

(But when I look back, my ear flares started when I was 23, before I was even diagnosed with the multiple sclerosis)