Frustrated with my Rheumy

Went to my rheumy today and was told I don’t have an AI at all even though while on prednisone and plaquenil my ANA went from 1:1280 to 1:320  not to mention I have felt much worse since I was taken off of them last Dec.    I’m so frustrated I was told I was fat and have sleep apnea and that has caused tennis elbows problems, rotator cuff problems, muscle weakness, Raynaud's phenomenon, sore hands, feet, hips, knees, ankles, wrists.   The +ANA, very high CRP and ESR mean nothing.   He recommends a vigorous exercise rehab.   I get wiped out and suffer from just cooking or doing the dishes is he kidding.   Oh and my rheumy doesn’t believe in Fibromyalgia as I learned from the Lupus clinic rheumy when I was referred there for a second opinion in April at which time she diagnosed me with Fibromyalgia.   How bad does it have to get to be diagnosed properly?  I guess if it gets bad enough they’ll be able to diagnose something.  I’m just hoping its not at the autopsy.

 

Sorry for the rant I’m just so mad and frustrated right now

 

Thanks for listening

 

Bryan

bryan, I know how you feel. In the past 3 yrs I've been told I have tumid lupus, then to sle, then to I don't think you have lupus. ( and the last by just looking at me no blood work what so ever!) I don't know what is wrong with me but there is something wrong!

You guys are making me very thankful for my Rhuemy.

I hope you are all able to find decent doctors.

Hey Bryan, yeah you need to shop around for a 3rd opinion.  For some (like me too), it takes a long time to get anywhere.  It's absolutely stupid.  We're here for you.  Whatever we can do to help, we'll sure try.  We've been where you are my friend.

 

Blessings,

Ginny

I hope things go well with your doctor. If that rheumie didn't believe you have autoimmune disease he should have tested you for lyme and every possible infectious organism because obviously, from your bloodwork and health, something is wrong. (I was told the same thing for 15 years when I have lost half my skin pigment and have dark patches and obvious signs of lupus--people on the street would stop me and tell me to go to the doc andtell them to test me for lupus, my malar rash is so classic). Mayo was reluctant to diagnose me with any autoimmune disease because they want to focus deeper on possible causes like unresolved infections. That did nothing for my daily life and to get through the day. They decided I definitely had autoimmune disease without question when They found huge lymph nodes lit up on my PET scan after they told me I definitely did NOT have cancer (with absolutely no testingto support them).

For some docs, it makes them feel big to do this, to go against the grain and to make pronouncements. I did realize one thing, that while I prayed for myself and everyone else who was sick, I did not pray for the doctors. Praying for them seems to help my attitude. I'm very jaded about medicine.

I don't know where you live but I have an excellent male rheumie who is very very good and would get you back under control. Why stop the plaquenil? I don't get that one. I'll probably be on that forever. I hope your new doc helps and maybe your cousin can go with you. I am overweight, and nowadays it has become politically correct to be downright cruel to anyone overweight. Most people who are drastically overweight have medical problems that preceded their weight gain, inmy case, my liver. I argue with docs about it all day long. ONly the liver transplant guys understand really why I have weight and have lost so much muscle and how hard it is for meto lose any weight with a malfunctioning liver and endocrine problems and rounds ofsteroids.

I feel for you and hope things work out.