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Help ... Where do I turn next
pooser25962 posted:
I was recently diagnosed with Lupus by my family doctor after undergoing many test he referred me to a rhuematologist who after seeing me for about 2 mins ordered more tests, wrote a Rx, and told me I was "crazy and needed to see a shrink." When I went back for my second appt he said everything was normal that I really needed to make that appt with a shrink. I have contacted other rhuematologists and been told I have to have a referral (even tho my ins doesn't req one) and that it could be approx 6 mths b4 they can get me in if I can get my reg doctor to do the referral. I'm lost, confused, and don't know which way to turn for help. I know I'm not crazy or insane or lazy or a hypercondriac or any of the other terms I've heard in the last few months. Or, maybe I am and it's all in my head. Who knows? If fact I'm at the point of just saying screw it and whatever happens to me happens because I can't get any help. I've even heard from family members and friends, oh it'll be ok it'll pass. Or, I don't see why ur upset it's not like u have cancer and ur gonna die in 6 mths. What gives. I even tried calling the National Lupus Foundation - they gave me the name of a rhuematologist who no longer practices rhuematology but has changed to ortopeadics? Even tho it's only been a couple mths since I was diagnosed I've suspected it for a cpl years and I'm already so sick of being tired, feeling bad, my chest hurting, shortness of breath, and just hurting all over in general, and the crappy attitudes of people and doctors. Any suggestions???
lisatru62 responded:
I spent 15 years trying to convince doctors that my symptoms were real. They said it was stress, menopause or even all in my head. I began having dizzy spells and pain that knocked me on my ass and kept me in bed. I couldn't think straight and my hair was falling out. It totally sucked so I spent my own money and went to a hair guy for the hair loss and he said I needed to see a dermatologist. Armed with this advice I got the needed referral and she said it looked autoimmune related.

Many months later and a ton of testing and I have been diagnosed with discoid lupus and SLE with lupus nephretis. I'm on meds and no one thinks I'm crazy anymore. You have to keep at the doctors and if you have to spend money out of pocket to get a diagnosis, I say you have to do it.

Don't let them tell you your crazy. Many autoimmune diseases are hard to diagnose and it may not be lupus but something else. Keep trying.

lupylisa44 responded:
My suggestion to you is to talk to the doctor who diagnosed you and let him know what happened and then ask him for another referral.

With love, with patience and with faith, we'll make our way.

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