Help with lots of problems

[Gatsby1997]

Hello everyone I am new here, I honestly may be in the wrong place, I am just desperate for some guidance. For a few years I have not been right in terms of my health, In the last two years I have been diagnosed with a range of problems which all seem to flare up together in clusters. In 2017 I was diagnosed with Polymorphic Light Eruption, a sensitivity to light, which I have light therapy for in the Spring every year, which I treat with steroids if I go on holiday. I have also recently been diagnosed with Hemiplegic Migraine, which I take amitriptyline for every night, however it seems to be happening more regularly at the moment. My concerns at the moment centre around the fact that I have had about 6 Kidney infections in the space of two years, and then episodes of suspected kidney stones, due to severe left loin pain. However when I saw the urologists a couple of months after I was referred he was convinced that the pain was separate to the constant microscopic haematuria always found in my urine. However other Dr's are convinced it is stones. I always have blood in my urine and only recently protein and nitrates showed up, however possibly due to infection. my renal blood tests were normal. I feel like I am constantly getting infections, and when I do I seem to take a while to recover. I have flu like symptoms every day, but no temperature. Every time I see a Dr with my concerns they always seem to be confused, one even suggesting I had CFS/ME. The neurologist was convinced my hemiplegic migraine was causing these symptoms. I just don't know who to believe. With my ongoing Kidney infections, constant microscopic haematuria and all of my other symptoms particularly my light sensitivity, I have started to think that it may be a possibility I have lupus. I may be completely wrong, but I just can't help but feel like something isn't right in my body, I am really struggling and I don't know what I can do. I am here to ask for some advice on the best way to approach my GP about this as I don't want them to think it is all in my head and that I am wasting their time.

[whisperit]

Hello Gatsby1997

Sounds like you have lots going on and you are perfectly right to insist on getting a clear explanation and reassurance from your medics. The diagnosis of lupus/SLE is quite involved and often takes a long time, but it's also worth considering if you have another systemic auto-immune disorder. Have you seen the LupusUK leaflet on symptoms and diagnosis? (it's on the "Home " page here).

I'd suggest taking a look at that and then going to your GP with any questions that are bugging you. How does your GP account for symptom X? Why does s/he think it could not be lupus? What plan does s/he have for monitoring your condition? If you have a unanswered question on your mind you have every right to seek an answer. x

[Gatsby1997 in reply to whisperit]

Thank you very much for your reply, I have found the leaflet very useful and I think it is worth me speaking to a doctor about it. I just saw my GP about my left loin pain as a follow up from the hospital on Friday but they pretty much said it can't be kidney stones as scan didn't show anything in a previous episode earlier in the year and I expressed my concerns around all of my symptoms and she said it could all be in my head, I know the mind is powerful but the pain makes me throw up! Not really the response and reassurance I needed. Thank you again though!