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Patients Lupus

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Member Carenity
Posted on

 I had a bad infection about a year ago and the doctors at the hospital suspected an autoimmune disease but I had already been researching lupus. Now a year later I have so many "idiopathic" problems that have to add up to something. I really hope someone will read this but here are some symptoms. #1 and most troubling has been the extreme fatigue. I went to sleep studies, was tested for Narcolepsy and was told I didn't get any REM sleep the 18 hours I was there sleeping and taking naps. So now i'm on stimulants that aren't helping much. I'm anemic with low blood counts and hemoglobin, low CO2, (don't know if that correlates but I'll ramble everything off quickly), occassional Malar rash, heat sensitivity, painful urination without infection and 2mm (a year ago) cyst on my kidney, stomach pain, nausea, confusion, memory problems, seizures (still idiopathic and ok with all my doctors!) Headaches, hair thinning, and joint pain with swelling in my thumbs (I'm young but have some arthritis in my neck). The other thing I have found is leukemia and other blood cancers but I've just thought lupus fit better. My doctors are aware of all of this and I'm going to finally at least have an ANA Panel done. Does anyone know if that's covered by insurance? This will probably get costly and I'll give up because I've lost faith. I also had a precancerous skin wart that my doctor thought was abnormal but instead of removing all 5, he removed 1 and didn't think to order further tests! Someone please share their story. I know diagnoses can take years so I'm willing to get the important things done first. Thank you for listening! 

Beginning of the discussion - 3/18/19

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Member Carenity
Posted on

I total understand and a diagnose can take years . Truly, they only treat the symptoms . The infection is it on the skin?  Was a biopsy done ?  There is a autoimmune of the skin called morphea. It starts as a bruise like and turns like a sore it’s painful. It can present like cellulitis if doctors are not familiar . I’m accepting new normals and learning natural ways to help . It’s still very very hard . I’ve been in a active flare for over a year . I pray you get some Answers

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Member Carenity
Posted on

@Hidden username diagnoses unfortunately take years and often come with numerous misdiagnosis. I have been there and struggled with that. You have some symptoms of lupus, but lupus has so many symptoms that are common of others and the symptoms differ freatly from one person to the next.

Such that it is impossible to say until you get the diagnosis and the treatments begin to work.

I have known people that have taken the ANA test and had it positive, yet ultimately they still did not have lupus. They had some other disease stimulating the immune system.

When is your ANA test?

Can a few people help who have more knowledge?
Member Carenity
Posted on

sorry to hear your symptoms, but be strong and everything will be fine. As lupus is very hard to diagnose, you may take months or years to have an accurate diagnosis. ANA test isn't sometime enough to diagnose your lupus, as several other autoimmune disease also have positive test with ANA test. You may do other blood tests, like CRP and ESR, urine test, imaging tests, tissue biopsies to know whether you have lupus or not