michelle from La trying to get my life back-------

June 16, 2002

Hello everyone sorry for not keeping better in touch, but it is such

a struggle for me to even get up-i am just trying to live day by

day. I don't know if you read the e-mail from my dad, Bob, but I

made it back from the Mayo and it was a very productive trip. They

ran every test you can imagine on me and the official diagnosis is

RP. Thank goodness someone had the courage to say it. The fluid I

have they say it cartledge adn the Pred. so I guess it will go

away. Dr, Luthra said he only had seen one other case with fluid in

the head so if anyone has it you know the pain i am talking about.

They are slowing reducing my pred. thank goodness, now I am taking

40mg, instead of 45. Any little bit helps. They have upped my

Neurotin to 800mg 3 X a day instead of 300 3X per day. They have

taken me off od Methro-and put me on Cellcept. I hope this one works-

but instead of waiting 3 months it only takes 2-4 weeks to tell if it

is working. I am having some prblems with my kidneys-I am not sure

what they are going to do an=bout that.

And for those of you with lesions, try using Vinager and water-it has

helped heal a few places that have been open wounds for about 5

months for me. But be very careful it really dries out the skin.

The dermatologist said to soak it twice a day for 20 minutes but I

have found that that it too much. So act at your own risk.

anyway thatis about all for now. I will try to make it a point to

keep better in touch, these past few months have really been hard on

me. I am just 1rst trying to accept these and 2ndly live with it.

Hope that everyone is having day-noght whatever it is. And if my dad

reads this happy fathers day-

michelle-----mrlchris@...

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