Dawn- hope this helps

October 20, 2001

Dear Dawn,

Cath here. Just getting a chance to read your post. I am so sorry to

know you are going through what so many us have done many times also.

I know the frustration and helplessness of doctors who won't listen and

have walked out of offices more than once with tears running down my

face.

Hang in there and channel your anger towards finding at least one doctor

who is willing to work with you as symptoms arise. I have had 5 primary

care doctors, 4or 5 rheumatologists, 2 neurologists and 1 pulminologist

and neurophthalmologist.. Needless to say much time and considerable

money has been spent trying to get help.

Ask God to lead you to a doctor who will admit he doesn't know, but is

willing to work with you. Contact your local Autoimmune society or

rheumatoid arthritis suppport group and see who they have had luck

with. Call the office before hand and ask if the doctor has ever heard

of RP and if not, is he the type of doctor who is willing to read

literature from you. Ask to speak to the Doctor's nurse, don't leave it

in the receptionists hands. Ask the nurse to please clear this with the

doctor before you waste your time.

It is possible to find doctors, but goodness knows it is hard. I am on

very unconventional meds and clearly thank God he has given me the

strength to keep fighting for my life. Your upset will keep you in

flares and we all know what that does so feeling helpless in my case is

just a state of turmoil.

Create your own medical file with every report and labwork you have had

done. It may be hard to create from the beginning, but doctor's have to

give copy of this to you if requested. Keep a copy of this and take to

each doctor you go to. I make a copy for them ahead of time for their

files and they seem grateful that it doesn't have to be copied by their

staff, that seems to take the edge off of it.

If doctor's eyes glaze over while your talking about your symptoms and

you don't feel right, just tell them you need help and if they don't

wish to spend time and effort as their oath states, then walk out. I

work for a doctor, but have done this myself. They are no better humans

than us and we deserve a chance to live quality lives.

Regular bloodwork on me looks totally normal, just really wierd stuff

like ANA, complement C3-C4, Igg and Iga and other really wierd test come

back abnormal. I can list all the wierd tests I had done recently since

they ran 7 vials on me due to my right eye bulging and possiblity of

Myasthenia Gravis with drooping of other eye. Running these tests

periodically is a must and just not normal labs.

If your insurance is a problem, call customer service and demand to have

a case manager assigned to your case. They can help assist you in

getting stuff done that regularly may not be allowed.

Please feel free to vent and let us know what your going through. We

all learn from each other and I for one know this group has given me the

strength and support to keep going. Maybe someone else has ideas, we

have very smart people in this group who have learned to listen to their

bodies and respond accordingly.

I did read an e-mail from someone who was upset about posts involving

Christian philosophy and probably my e-mails about God and how my faith

has carried me through so much. I am sorry if this offends members, but

I can honestly say I wouldn't be here if not for the grace of God and

many, many prayers from everyone.

I can only speak for myself, and do not pretend to think that God is

everyone's answer or even open to it, but if I can help anyone know just

how much my belief in God has done for me, then I will consider my life

worthwhile. When really frustrated, I try to help others and it takes

the edge off of what I am going through.

God has blessed me with my many friends in this group and with wonderful

family. I don't have them near me, but I do know God is always with me

and it is a great source of comfort when I am feeling like I can't go on

such as it sounds like you feel.

I will pray that God gives you understanding of these sorry doctors and

keep fighting. I have climbed so many mountains and continue to do so,

but God has carried me over each one when I can't go further myself.

Hang in there and believe we are here also to try to help.

Hope this helps a little and know we do understand. Just knowing others

have gone through this helps me and arm yourself with knowledge.

Keep going and fighting and it will get better!

Cath

ERE GOES, I AM TOTALY TICKED OFF, PISSED OFF OR JUST PLAIN MAD

DON'T KNOW HOW TO HANDLE THIS. I WENT TO RHEUMY TODAY,

TRIED TO TELL HIM ABOUT HOW I HAD BEEN FEELING, ESPECIALLY LAST

WEEKEND, I REALLY BELIEVE I WAS DOING INTO AN ADREANL CRISES, WELL

HIS RESPOSNE WAS WELL I DON'T KNOW, MAYBE, THEN LAUGHED

TOOK IN A REPORT FROM THE RADIOLOGIST ON MY BONE SCAN THAT SHOWED

DEGENERATION OF THE LEFT FIBULA ALSO HIP JOINT AND FOOT, WELL HE SAID

YOUR STILL WALKING AND HAVE MOTION SO ITS NOT THAT BAD. I ASK FOR

SOMETHING ELSE TO TAKE BESIDES THE PRED SO I CAN GET OFF OF IT A LITTLE

BIT MORE, HE SAID YOU DON'T NEED ANYTHING ELSE BESIDES THE METHO. I

ASKED FOR SOMETHING FOR PAIN BESIDES JUST TYLENOL, NO ANSWER.

HIS ANSWER TO THE WHOLE THING WAS LOOSE WEIGHT, NOW LET ME SAY THIS I

HAVE PUT ON ABOUT 20 POUNDS IN THE LAST YEAR FROM THE PRED, BUT WHEN

I STARTED PRED I WAS A SIZE 8 NOW I AM A SIZE 10 NOW TELL ME I S THAT

TOO FAT, WILL HE HEAR ME ANYMORE IF I AM A SIZE 0 THAN A SIZE 10.

THERE ISN'T ANYONE ELSE IN THIS AREA THAT KNOWS ANYTHING ABOUT RP, SO

WHAT AM I SUPPOSE TO DO. ALSO MY INSURANCE WON'T PAY UNLESS I HAVE A

REFERALL , AND I KNOW HE WON'T GIVE ME A REFERRRAL, NOW I AM REALLY

STUCK'

I FINALLY DEMANDED AND GOT A PRESCRIPTION FOR PRED IN 1 MG TABLETS

INSTEAD OF 5 MGS. TOLD HIM I WAS ONLY GOING TO LOWER IT 1 MG EVERY 3

OR 4 WEEKS AND THAT WAS IT.

SORRY GUYS BUT I HAVE HAD ENOUGH, CANT' FIGHT HIM ANYMORE

JUST GO WITH THE FLOW, AND THE PAIN SO WHAT, TOLD MY HUBBY WHEN I

AM DEAD JUST SUE HIM AND GET RICH.

SORRY, JUST BUMMED OUT TODAY, DR BELIEVES IF BLOOD WORK IS NORMAL

EVERYTHING IS NORMAL DR THAT IS

DAWN

October 20, 2001