My tirp to Mayo

[Guest guest]

Sunshine, I'm so glad your trip was a successful one. Sounds like you got a

lot of good info.

I am on Plaquenil for RP and it has really helped me. I know it has done

nothing for others, but as we keep saying, we are all different. I have had

NO side effects from it and was even able to lower it. I was first taking

200mg a day and now am 100mg and it is keeping the RP at bay. I too have my

eyes checked with an opthomologist every 6 months. So far so good, except

for the steroid induced cataracts. LOL

Good luck and glad to see you are empowered and will take charge of the ENT.

You go girl!! ..

hugs

[Guest guest]

HI, i am sorry that i have not been able to keep up with all the posts. That does NOT mean ya'll have not been in my thoughts and prayers! Especially while at MAYO!

So i'll cut to the chase...RP diagnoses is still "out". I am to TELL my ENT i need better care and to be SEEN (no voice-mail conversations) when i am flaring so that he can EXAMINE me EVERY time and document (usually when i call with a flare they say they can see me in 6 weeks)....Dr. Michet so empowered me to do this and to find a new ENT if my present one cannot comply! I already have an appointment with my ENT, THIS week!

In the meantime, Dr. Michet and i have agreed for me to try an anti-depressant whose side-effect is relaxing the muscles around the voice box and throat area...muscles relaxants don't work in this area and the side effect of "celexa" is relaxing these muscles! I have an appointment with my PCP for this RX and maybe others...

I will be on Plaquinel for my scleraderma. I understand many of you are also on Plaquinel. I have an appointment with my Ophthalmologist in 2 weeks to give my eyes a good once-over before i start this RX. I understand that i will need her to check my eyes on a very regular basis while on Plaquenil....any comments on this drug?

I also learned that i have "borderline" asthma...well this shouldn't have really been a surprise b/c it runs in my family, but it was!

I do not have several other diseases that i was tested for, but did not know about! ; ) I do not have GERD (acid reflux) which i have been treated for for the last two years....now, did the treatment help or did i EVER have it?!??? After i quit taking the meds for GERD do i want to wear that PH monitor (AGAIN ?) to find out?!?!?!

Whew, yep, relief. Even though i still do not have a positive or negative on the RP and it is still a ?, i now have a path and a treatment plan and a good team of doctors on my side! And as i said i feel so much more empowered to make sure the Doctor's continue to care for me as I see necessary.

Aloha, ...you were right, i liked Dr, Michet very much. He REALLY brightened when i told him "HI" from you! Another GREAT doctor was Dr. Aponte..she is a pediatric dermatologist that specializes in scleroderma...and no, i am far from childhood (well maybe i'm getting into my second one; )).

Squeak, hope you are feeling better and having less pain...like NONE?

, sounds like you are in need of some rest?

Sharon, hope everything is o.k. with your hubbie!

Happy Birthday to all i missed and to Barbara C...a Virgo like me!

Love y'all,

Sunshine

[Guest guest]

`RP diagnoses is still " out " ' = blue too!

If Mayo still can't DX you?

Who will ever DX blue?

" celexa " = blue too!

Taken by blue for a year or two.

Few side effects makes it easy on you!

Scleroderma = blue too?

My skin is very weird, but doc says " NO! "

When you found out, how did it show?

Virgo = blue too! (sort of)

My husband is the Virgo!

Nothing rhymes with him!