PhysiciansforPatients - Created by physicians. Made for Patients.

Pamela

Hey Raven, I definitely understand where you're coming from.  I"ve been having attacks of pericarditis, pleurisy and musculo-skeletal inflammation for 20 years.  The docs never knew what was wrong.  I finally got a diagnosis this year. 

4 months ago

Janet

Oh my gosh, Raven.  I had the same GP for years, and in addition to not listening to a word I told him, he also didn't run any tests to try to figure anything out!  If not for changing doctors last year, I would still be walking around with the label of hypochondriac, which was cruelly given to me by my own family!!  I am with you and every person out there, if there is anyone going through needless suffering, push for the answers and be your own advocate!  Thank you for sharing your story, Raven!  ((Hugs)) Janet

4 months ago

Camille

Thanks for the info ladies, I have never heard of Atypical Diagnosis.   You're right about  family. friends and spouces can be very cruel .    I've learned from my experiences and from studying, that there are several reasons for their behavior.  Some are in denial, others are just ignorant, and finally some are selfish along with whatever problems they may have.  The result is that you end up feeling alone, but we have to be stronger than anyone else, and I believe in Faith, and in the higher calling to get us through it. 

4 months ago

Raven

Neeledss to say, I am floored that Ive gotten the responses I have to this article! I wrote it because I KNOW how hard it is when you know whats wrong with you but the docs seem to be deaf, dumb and blind!! Im just glad people are getting something out of this writing!

4 months ago

Janet

Yes, it is an excellent topic, Raven!  It is sad! When I was told by my internist what she found in my blood tests indicated Lupus, I was so happy and excited!!  Can you imagine?  Being happy and excited to have an autoimmune connective tissue disease?  lol  It was validation for all of the years of suffering.  Darn it that anyone has to go through that!

4 months ago

Raven

The saddest part is that SO many docs refuse to acknowledge anything unless the bloodwork shows it! I actually had a rheumy refuse to see me because of that and that was AFTER my 1 GP referred me! Figure that one out!

 

4 months ago

wendy

i to have been battleing a blood disorder for the last year and a half almost they have to keep taking blood off because my body is producing to much blood(rbc) my white blood count however keeps coming up perfectly normal they keep telling me .but today i was diagnosed with lupus erythematosus tumidus and this site is the closest thing ive come to understanding it the doctor is good but was worried i couldnt handle the truth i think,i am very young compared to my specialist so they tend to treat me with kid gloves.but i want things done and all im hearing is ...no.... i asked for a referal from my dermatolist to see another hematologist she said....no....my blood doctor looks like hes sleep walking uhhh.everytime i ask him what i have he says i want to call it smokers polycythemia (he thinks) so i just keep going back to him getting blood takin off and having blood drawn everytime in hopes that my red blood count is miraculasly gone down.this is so frustarting that he honestly thought at one time that i had quit smoking he told me after he had drawn blood that my rbc was down well duh you took blood off thats why its down gosh im sorry for decieving him and telling him i quit smoking but thats all he wants to believe this is and i cant settle for that i was normal before all this and i just want to know how to start to get over it,thats all i want im going in circles and my doctors dont listen to me very well,i have never been one to take pills and i did have my occasional alcoholic beverage dont get me wrong thats why i didnt like the idea of pills.but im done with all that i gotta keep a clear head so i can find out for my doctors whats wrong with me.wow that felt good lol

4 months ago

Laurel

Even when one has a diagnosis of lupus, doctors can be frustrating. I was in to see my rheumatologist yesterday and came away very frustrated. He gives you about 5 minutes of his time and when you ask intelligent questions he just kind of blows you off. For example. I asked about what he thought about the Benlysta trials and he told me the trials were showing it to be a great disappointment, that I should just accept that I will probably never have complete cessation of my symptoms so I shouldn't rock the boat and I should be satisfied that kidney involvement appears to be in remission. I came home and went online and found an article dated October 20/09 saying how trials have shown a superior response in reducing symptoms and incidences of flares. Also when I told him about how my symptoms had returned following reduction in Prednisone, he told me I should reduce it again. What the hell?? It's like he didn't hear a word I said. He is sending me for physio and wants to see me in 6 months. I am going to seek another referral.

4 months ago

Linda

I hope all of you whose diagnosis was delayed because you were not helped by doctors write a letter to these doctors and tell them about your diagnosis and your dissatisfaction with their services.  I believe we need to tell our stories; this is the only way to help others who are still going to these docs and hoping for a diagnosis so they can get appropriate treatment!
If the doctors cannot diagnose and treat a patient, they should refer them to someone who is apt to find the problem.
Linda

3 months ago

Michelle

I'm so glad to know I'm not the only one!!  It wasn't until I could barely get out of bed and function before I was finally diagnosed!  I had an Epstein Barr of nearly 900, a slightly positive ANA, a slightly positive rheumatoid factor.  I finally found a rheumatologist who listened, looked at my SYMPTOMS and diagnosed me.  I still have relatively normal lab values and am on predisone, cellcept and plaquenil to keep my symptoms at bay, but still feel horrible a large part of the time.  I have to remind myself of how bad I felt before the meds!  It can be very discouraging.

last month