So much changed in 6 months

By Rhupus

1 min read

I am 73. I c/o pain in my lower legs to my primary care physician who did testing for a whole battery of autoimmune diseases. My dsdna came back positive. I was referred to a Rheumatologist who did a very brief exam, looked at 1 diagnostic test and said I did not have Lupus. 6 months later when symptoms were getting increasingly worse my PCP sent me for a second opinion. Turns out I have Lupus and Rheumatoid Arthritis.

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Rhupus Member
My name is Joy Fargo. My comment is one of concern. I was not expecting this but there is a significant percentage of Lupus team members who rated their treatment below the average . We come from city’s and towns virtually every where in the world. Our cultures, our environments, our families, our communities, our doctors are as diverse as we are. My analysis of that makes my heart sink. I know that there is more research to be done. This disease is not curable and apparently not even its symptoms or the tissue/ organ damage it does can be managed satisfactorily from the results of this poll. For me, at age 73 that is a nightmare I will never wake up from. But I will always have faith in the Lord that he will give me the strength to handle it.
1. Erin Rush Community Admin
 <inline-mention username="Rhupus" user-id="9903617"/> (Joy), my heart goes out to you. It stinks when the very specialists that are supposed to help us fail us. Your rheumatologist should have taken more time to examine you and consider more than just a cursory exam and one test result before dismissing your concerns. Ugh. Most good rheumatologists will rely on a battery of tests (including physical exam, bloodwork, getting a brief history from the indivual about the symptoms they have been experiencing, etc) to diagnose an autoimmune condition like Lupus and Rheumatoid Arthritis. And Lupus tends to often be one of the "redheaded stepchildren" of the autoimmune disease world, if that makes sense. It seems to be very poorly understood by many medical professionals. I wish every person had the level of healthcare they needed and that it was easy and affordable to access! But, alas, that's just not how things work in this world, is it? How are you doing right now? I mean, I know you aren't feeling very optimistic at the moment, but are you on any medications or treatments to manage your symptoms? Please know you're not alone in this and I pretty much agree with your assessment on the situation for Lupus patients. Best, Erin, Team Member.