LUpus Patients Understanding and Support
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How to be Diagnosed

I'm 99% sure I have lupus but have no idea how to get diagnosed (and have no health insurance).

I've had blood work done over the last 6 years and the results show a infection and inflammation of the organs (The C Reactive protein normal range is 0-4.9. Mine is 28.2)

2-3 times a year I have flare ups that show like an extreme case of the flu and knock me down for a week. Antibiotics do nothing. Steroids do nothing.

The only thing that has helped is building my immune system using blood/urine/GI/hair/hormone tests to customize a regiment of vitamins/minerals/supplements for my body (which a certified nutritionist did).

The local hospital system in town sent me to the infectious disease department who in turn rejected me. I am SO tired of dealing with people who won't take me seriously. I look fine most of the time. I can work out (did CrossFit for 2 years), work an office job, and look completely normal. But then I crash really hard really fast and it takes months to get my strength back.

Recently when I get out of bed my body aches. Like I just workout. But I haven't done a workout since this summer. My ankles and knees hurt. If I sit at work for more then 30 minutes I'm stiff and sore.

Does this sound familiar? Any suggestions? I know this is an autoimmune thing. I just don't know how to get it diagnosed and treated.

Thank you!

4 Replies
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If you are in the UK, I would recommend a referral to Dr David D'Cruz at the Lupus Clinic, St Thomas' Hospital, London.

A high CRP usually means an infection, which is probably why you were referred to infectious diseases.

What about the ESR - is that also high!

A high ESR & low CRP usually means inflammation. A High ESR & CRP usually means an infection. However, this is not cast in stone.

Diagnosis of SLE requires a specialist in SLE and notall rheumatologists are expert; some have never treated a patient with lupus.

Diagnosis is done on a clinical basis.

I know you have Registered with LUpus Patients Understanding & Support (LUPUS). There is an article you may find helpful:

lupus-support.org/topic/253...

You can post a message and we can talk there.

With good wishes,

Ros

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I know it is very hard because I was trying to get disability with my daughter when she went on kidney machine that's when they gave her disability but keep trying you would get it

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This must be very hard for you to witness your daughter suffering from kidney disease.

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I'm kind of similar. My hip joints get really painful if I sit for to long. What I have found is yoga. If I do yoga for about 30 minutes twice a week, everything seems to work fine. If I don't, my hips let me know.

Hope this helps.

I like a more natural approach. No drugs.

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