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Struggling to get diagnosed!

Hi, everyone!

I'm new here, to the lupus community. Like many before me, I've been struggling to get an accurate diagnosis.

It's been a long process so far. My symptoms started back in October, with random swelling of my right forearm. I went to the ER, where the doctors agree it was probably tendinitis. I went home with a prescription for anti-inflammatory meds and muscle relaxants.

About a month later, I started randomly swelling again, this time, my left leg. Went to the ER, got a doppler ultra sound of both legs, got anything serious ruled out and was instructed to follow up with GP.

In the meanwhile, I developed strong upper back, and chest wall aches, like muscle aches, but not really. As if it was sore, inflamed. My joints hurt, mostly my hands, wrists, shoulders and neck.

We started to suspect it might be lupus because of my very strong family history (grandfather and aunt, countless other relatives), and after all my scans (heart, abdomen, chest x-rays, etc) came back clean. My blood tests showed an acute inflammation process with positive ANA, altered C3, C4 and CH50 proteins. Still, not enough to go on.

I've been in this process of swelling on and off since October. I finally got to see a Lupus specialist last week. My appointment went very well, and it lasted over an hour. She was very careful and thorough, but in the end, all she said is that she believed that my edema was caused by an antibody inhibiting the production of the C1q protein, which unleashed a chain reaction. She said it is auto-immune and she's only seen it happen in Lupus patients, but it could be genetic and unrelated, so, I get to do more tests.

Meanwhile, I have no answers and no treatment. What has been bothering me the most is how this is getting in the way of living my life and that I have no answers. I can't be properly treated until we find out more. I take several advil every day just to get out of bed and do normal things. I don't know what to do. I was wondering if anyone has any advice for me on how to cope and feel better while waiting for diagnosis and, consequently, treatment!

Thank you!

2 Replies

Hi wondering unicorn

Great name you've chosen!.welcome to the forum, hope you like it here. Are you in UK or US?. Sorry to read of your diagnosis difficulties!. It can take a long time and be a difficult road to travel down!. What I would say is your really making progress now although it doesn't feel like it!. You've ascertained what the swelling is and cause now is auto-immune which is the breakthru you need. Now these further tests will hopefully narrow down which illness it is and best treatment to try!. A lot of us on here have lived with symptoms for years and had negative results and have had to really battle for recognition and help from doctors, myself included , so you've done very well!. Hang in there and you'll soon be sorted. Hope you don't wait too long for these further tests!. Keep us posted. X


Hi wanderingunicorn,

I'm sorry to hear that it is taking so long for you to get a confirmed diagnosis. It is great to hear that you are now being seen by a lupus specialist and some progress is being made. I hope that you do not have to wait too much longer for a diagnosis and the start of some treatment.

If you take a look at our blog at you will find a series of articles that cover various 'self-management' topics for certain lupus symptoms. Some of the advice in them may be helpful for you while you are waiting.

If you need more information about lupus, we have a free pack which you can request or download from our website at


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