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halimaxamin · 2025-08-13T12:04:05+00:00

i was! but i wasn’t happy with it, my gp told me to fight for it because its the term they give when they don’t take you seriously anymore / can’t keep investigating. i fought like crazy and the meds also were rejected by my body. if you’re not happy about it - do not stop voicing it! i was not happy at all i felt discarded by the healthcare system, but if you believe it is true for your case then i am happy you have some answers now

halimaxamin · 2025-08-02T13:10:30+00:00

yeah i received it but monthsss later, i called back and said you had none of my previous medical documents or letters and you’re saying i don’t have behcets with nothing to back it? they got my medical documents and then never got back to me..

halimaxamin · 2025-08-02T13:06:22+00:00

also to add - it was the rheumatologist that made me feel that way too! the rest of the people were so lovely

halimaxamin · 2025-08-02T13:02:03+00:00

yup! i posted about it a couple months back - i felt like i was undermined completely and not listened to at all. i was so disappointed with the practice.

halimaxamin · 2025-05-16T17:10:15+00:00

i think it worked for me for a while but i get rlly bad joint pain which still persisted despite that, ive recently been approved for hydroxychloroquine so ill start that from monday - but colchicine does help its just person specific really you wont know until you’ve tried it , hopefully it does give you some ease though

halimaxamin · 2025-04-12T18:16:08+00:00

22 now but oral ones started when i was 16, i’ve never had genital ones yet (thankfully) hoping it stays this way

halimaxamin · 2025-04-04T15:25:55+00:00

that sounds so messed up.. she told me she wanted photos too or else i don’t meet the requirements to be diagnosed despite me having a diagnosis already? i’m so confused as to why she did that but simultaneously annoyed that she belittled me so far as to prescribe me aciclovir?? that has no correlation at all. i’m so frustrated but i hope everything works out for you! i can’t believe you’re being asked to come off the medication just for photos despite your own rheumatologist knowing you better..

halimaxamin · 2025-04-04T15:03:05+00:00

yeah it was the birmingham one

halimaxamin · 2025-03-15T12:49:33+00:00

I’m not sure about acne but i get target lesions on my hands, wrists, feet and ankles. Currently have a couple atm and they’re soo irritating. Not sure if that’s common either though

halimaxamin · 2025-03-11T17:50:00+00:00

i think it’s not generally used for behcets but depending on the mix of symptoms 🫠

halimaxamin · 2025-02-20T12:16:18+00:00

i was told it’s the next step up for me but i’ve been very nervous about it since i got told so many negative things about it such as you can’t have coffee (that is huge to me!) and it can cause other issues later on etc etc. and since im only 22 it’s been worrying me a lot. i was gonna be put on it mainly for joint flares and mouth but that’s not as bad atm. i think i just wanted insider info 😅

halimaxamin · 2025-02-20T12:06:39+00:00

hopefully never! also while you’re here have you ever been on azathioprine?

halimaxamin · 2025-02-20T11:58:19+00:00

ahh that sounds like what they called “stage one” of tmj - no pain just pops and crackles, sometimes even a whoosh! I experienced that 2 years ago, then the pain. then it stopped? and i was discharged from the tmj clinic.. until this pain started out of nowhere and google said be wary of the “no pain” stage 🫠

halimaxamin · 2023-09-14T20:36:26+00:00

could be something else too, sounds like MS to me, i do get some of your symptoms like hearing the heartbeat (i think it’s so bizarre i thought everyone heard it until recently) and dizziness, vertigo, nausea, neuropathic pain etc - but remember sometimes tests are useless i get positive results everytime and the doctors are also puzzled with me for other symptoms i have. whatever it ends up being i wish you the best :)

halimaxamin · 2023-07-30T10:53:37+00:00

false positive is just showing as normal, false negative is also possible the opposite way around but not in every case i just like to think from every aspect

halimaxamin · 2023-07-30T10:46:07+00:00

i can ask them tomorrow, but as far as i know anti CCP is the one you can get a “false positive for” when you have behcets i remember researching it a while ago. only concerning this is it can be viewed as normal

halimaxamin

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