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A MyLupusTeam Member asked a question 💭
Zanesville, OH

How were you diagnosed? I was diagnosed with Hashimotos and 3 years later diagnosed with lupus based on various symptoms and ANA of 1:640 speckled with all other AI diseases ruled out. I also have photosensitivity, malar rash, low b12, low vitamin D, low B6, elevated liver enzymes, bilateral lower leg edema and lumbar arthritis with bone spurs. Didnt want to take the word of just my PCP so went to rheumatologist and was told lupus yet again. Sometimes I just really struggle to believe it even… read more

April 30, 2023 (edited)
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A MyLupusTeam Member

My symptoms started with stiffness in my hands and wrists. Since I type all day, the first answer was carpal tunnel or arthritis. It wasn't until I got the butterfly rash and suggested lupus to my PCP that we really started looking at other symptoms and previous test results that finally got a referral and diagnosis. My test results are still all over the place from elevated kidney enzymes, low blood cell counts and elevated muscle enzymes.

Thank you for sharing your story. Hugs. 🏵️

May 2, 2023
A MyLupusTeam Member

Feeling for you Amy.
That’s so not fair.😢
It’s like that in Australia too with getting any benefits.
Rheumatoid is recognised straight away as is Fibromyalgia MS Chronic Fatigue. Benefits handed out straight away for those. Which is great don’t get me wrong .
But not Lupus. It sucks.
After 2 years of trying to convince Centrelink with medical reports from specialists and doctors they finally gave it to me when I collapsed in front of their assessor.
So yeah feeling big time for you.
You are very brave. Hugs.
🦋🦋🦋🦋🦋🦋🦋🦋

April 30, 2023
A MyLupusTeam Member

Im sorry to hear that. Hope things get better for you from here out.

April 30, 2023
A MyLupusTeam Member

My family doctor told me when I was 16 years old that I had Lupus (SLE) and Rheumatoid Arthritis. Since they were basically treated the same he never put lupus in my medical records because that was back when insirance companies really took issue with pre-existing conditions. I fought the rest of my adult life to get the diagnosis so I could be properly treated. I'm almost 48 years old and just now found a rheumatologist that listened and took me seriously because my kidneys are trash. My left kidney is basically dead and not doing anything and my right kidney is functioning at about 30%.

April 30, 2023
A MyLupusTeam Member

Thats quite a journey! Im glad youre doing better. Good luck to you!

April 30, 2023

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