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Tonyarenee
03-13-2012, 09:40 AM
Have have suspected I may have Lupus for severl years now...though Dr's say pulled muscles..allergic reactions or just what ever they wanna call it that day! I keep telling them they are missing the big picture! I have never broke a bone in my life but the pains I get feel deep down like it is the center of my bones and joints to the point I am in tears at times! One day it might be my right shoulder next day can be the left the next day my knees! The rash on my nose and cheeks IS STRESS enduced! I stay sleepy, keep rashes, hives and welts, sores on my head and shed more than my dog, sores in the roof of my mouth, positive ana! Yet My rheumatogist is still flip flop! One visit its Lupus Next visit it isnt!
I have been calling for 4 weeks trying to get my primary Dr to do a Referal for Vandi to a new Rheumatologist who may be a bit more educated on Lupus, yet still have not gotton the primary to refer me! They act like it cost them money or would kill them to do a referal!
My new dermatogist is sure it is Lupus as my culprit just by looking at the molar rash and the pics of all the other skin problems and she says not Discoid Lupus! She believes I have Sle! I wonder why it is sooo hard for these other doctors to figure it out! Being as she is a Dermatogist she can pretty much just treat for the outer symptoms! And my Rheumatologist only gives MOBIC!
I am annoyed with these doctors and worry that they are going to wait for something really bad to happen to me before they take it serious! My red and white blood count is never right, My amylase runs high and low! The valves in my heart are already messed up and I have to take medicine for life for it! I just dont get these darn doctors and why they can not just humor me by treating me for Lupus till they rule it out! After all the worse it could do is help me! But I would supose that would be to much to ask of these so called Doctors! eeRRRRRR
I just cant get over how SOOOO many Doctors are so uneducated on Lupus! I believe we do need to ban together and bring awareness! I am getting a group together for the Lupus Walk in Nashville and Have been emailing Governors...serverl states recognize world Lupus Day and I think it needs to be all states so they can raise funding to educate these Doctors! So if you read and agree Email your governors! Over 50% of Lupus patience end up with Kidney damage I believe this number is this high due to undereducated Doctors!

debbie-b
03-13-2012, 11:11 AM
I totally understand your frustration. Not only do you want a diagnosis, you want to start treatment, to prevent worse things from happening.
The only thing you can do, is getting a new rheumy and give him the findings from your dermatologist. And don't stop, until you get answers.
Good luck to you.

Debbie

magistramarla
03-13-2012, 09:18 PM
Hi Tony,
You are right - I don't understand why it is so difficult for docs to educate themselves a bit about Lupus and other AI diseases.
Keep pushing for getting a second opinion from another rheumy. You are on the right track looking for one at a teaching hospital.
We are all a little more hopeful lately that the general public is becoming aware of AI diseases. With Phil Mickleson having Psoriatic Arthritis and Venus Williams having Sjogren's the sports world is becoming aware. Now I believe that Nick Cannon is going to be a very vocal spokesman for Lupus Nephritis.
Hopefully, our orphan diseases won't be as ignored anymore.
Hugs,
Marla