u/Pizza-Is-Sentient

Hi!

I been under rheumatology for the past 7 years for chronic pain. In the past (nearly) 3 years, I began to experience flares which were seronegative but which clinically made all of my consultants think "SLE".

My rheumatologist said to me "I cannot think of an explanation for this other than SLE, but that is unthinkable given your negative ANA". I've been in clinic with malar rashes which spare the nasolabial folds, heliotrope rashes, angioedema, uticaria, ischemic ulcers, proteinuria, haematuria, leukocturia, bilibinuria, ketonuria, etc. I have objective neurological, dermatological, renal, gastrointestinal, and mucosal involvement. The only organs that are completely unaffected are my heart and joints. Everything else is at least "touched" by the inflammation.

My autoantibodies (I've had a lot of testing) are always negative, but recently my bloods seem to be "catching up" with my body. My complement was normal 2 years ago; now I have low C4. Oddly enough, what's made my doctors begin to settle towards "lupus prodrome" rather than "non specific, could be random" is that my calprotectin went from 100 to over 400 in a month recently. I know that there has to be an objective serological basis for diagnosis, but it baffles me that through the years of seizures and fevers and rashes and swelling enough to close my eyes, the tipping point is that.

I really hope that this can be over soon, and that I can get treatment so that this can go away. I know rheumatological conditions, especially intermittent prodromal ones, often take years of monitoring before diagnosis. But I feel closer to a "precipice". I feel like it's becoming more and more clear in my tests, and to be honest I'm relieved, because I'm exhausted. I feel in a strange liminal position where in all of my appointments everyone says "SLE" and "autoimmune", but nothing is on my record, and there's no treatment, just observation until the next emergency.

How long did it take you to get diagnosed, if you have been, and what was it like?

Hi! I have a dynamic disability and several chronic illnesses. I was in a wheelchair full time between the ages of 10 and 12-13, before my mobility aids were taken away. I'm an ambulatory user and after about 5 years of being functionally housebound and covertly using public wheelchairs in locations like the airport, I had a really honest conversation with my family about how using a wheelchair would actually make me less disabled, and I'm finally going to be able to leave my house and be free! I'm so incredibly happy about that, and I've been researching various options.

I really like the idea of using e-motion wheels because they'd come with predictability and the extra safety of, should I suddenly become too exhausted to wheel myself, I'll be able to get home. However, I'm also somewhat reticent about them, primarily because I won't be able to do wheelies. I remember them being a really important part of navigating the world, and I also want to be dexterous and able to exist with the freedom I used to have. Pushing them isn't a problem; my disability does not currently affect my upper body strength and my physiotherapist has told me that I have excellent core and arm strength. I know that wheelies with the e-motion are prohibited, but is that also the case when they are turned off completely? Worst case scenario I think I could just ask for two sets of wheels, but I would really like the option to be completely manual or completely electric, without any limitations (I know that's far too idealistic). The shop we're working with has ordered in some demo wheels for me to try, so perhaps I'll get a clearer idea in a few weeks. Because I was acutely unwell during the first years of being a wheelchair user, I never actually went long distances without my parents pushing me, so I don't have an accurate gauge of how much stamina I'll have.

What have your experiences been, and do you have any advice or recommendations?