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Getting a confirmed diagnosis

Hello everyone! I was wondering if anyone may have some advice. I have had symptoms of lupus for several years now which entail kidney disease, Tia during pregnancy, degenerative disc and joint disease, pleurisy, asthma, gout, an enlarged liver and pancreas, low grade fevers, a positive ANA and fatigue. Over the last two years I have had 3 skin rashes which are the malar rash on my face as well as the discoid on my arms and legs. I was begining the process of being diagnosed and I was laid off after 9 years. I have been unable to find an affordable doctor without insurance, as well as any community resources. Does anyone know of a way to find reduced care? I can tell it is affecting my kidneys again and this time I am also have severe facial edema. I just want to begin treatment as soon as possible to ensure I am able to watch my daughter grow up.

5 Replies

Hi. I'm sorry you are having these awful symptoms and trouble getting a confirmed diagnosis and treatment because of lack of access to affordable healthcare. It must be awful.

In common with the majority of users of this Lupus UK HealthUnlocked community, I'm under the NHS because I live in Scotland. But there are others here who live in countries such as USA where there is no free state healthcare service for those with chronic conditions such as SLE, so hopefully they will see this post and be of more assistance to you than I'm able to be.

You may want to edit your post to put your country on the heading so those users from your part of the world can chip in with relevant advice?

Twitchy x


I can't help you with the system in your country, as I live in England with the NHS. I am sending a hug and my very best wishes though, you are having such a hard time ❤️


So sorry you are dealing with this!

Have you checked out the health connector? You can go online and check out insurance plans available in your state (imho look for ones with little or zero deductible). You can also apply for financial assistance (just need to prove income or lack there of). I was able to get an amazing plan.

Lupus is no joke. I hope you are still able to get meds?

Good luck.

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Hi Avesmommy57,

I'm sorry to hear that you have been so unwell without a confirmed diagnosis or treatment plan. Unfortunately I do not have much knowledge of healthcare systems outside the UK so I am not really able to advise you.

Are you in the USA? Have you tried contacting the Lupus Foundation of America for advice? lupus.org


Thank you very much. I do reside in the USA. I have reached out to our lupus organization and I was emailed back today!!! We are working on seeking care so I am very grateful for that. I have been in the medical field for 18 years now and have never been on this side.


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