Recurrent scalp lesion and maybe heart problem

[Shadow35]

Hi. I'm still not diagnosed but one specialist think i may have vasculitis. I check and behcet fit all my symptom except i don't have genital ulcer. I have a lot of them on my scalp and it's recurrent. I also waiting for a cardiologist because i'm out of breath easily and cough a lot. It's not gerd or asthma or allergy so it's the last option. Did you get a diagnosis my just looking at sore or the dermatologist really need to comfirm with a biopsy? And the cardiologist can he check if it can be relate? I have intermittent pain in my face, jaw and eyebrow ptosis. Neuro ruled out myasthenia and trigeminal neuralgia. I already have an auto-immune desease so i'm not gonna be surprise to have an other one. I just want to know how you were diagnosed because doctor are about to run out of test.

[stiff19]

sounds like at least someone is trying to figure it out. I have had much suggested and yet no diagnosis . my scalp was like this with bald patch and I had an awful cough for over a year, and still cough a lot ,dry cough, was told by respiratory I would get drugs to help breathing from rheumatologist but she said no probably just asthma, did ask gp to refer me to cardiologist leaving it in his capable hands but never did and to date have hhr warnings on my watch and feel it.had the pain in face jaw, couldn't and cant intermittently open mouth wide , I have had ptosis for 6 years undiagnosed, suspected myasthenia which fits other symptoms but like you I am sure there are two things going on here nit just one though im sure my thyroid is affected and what relates to that especially re skin problems I dont know . ive had so many problems re mouth ulcers knee problems , urine ,bowel problems etc just recurring and new problems all the time and no answers. I had no tests in way of biopsies, scans etc only scans tests years before symptoms worsened but was signed off by then.i cant answer your question sadly but I know we have to just push and push for answers, somehow though nhs seems impossible at moment. I have tried to help myself looking into what it could be but fits many things find it very hard to get help and have given up many a time but just keep going back looking for the answers, undiagnosed hell and symptoms is awful and for me its taken a huge toll, I think anything is easier to deal with when you know what it is. good luck and all best wishes 🙏

[Shadow35 in reply to stiff19]

I'm really sorry. Your situation look very similar to mine. My new gp don't want to do more test and say it's the rhumatologist job to find the rest. You really need to be refer to a rhumatologist. I had problem opening my jaw and it was a flare of spondyloarthritis. My rhumato increase the dose of my medication and it help a lot. They are the one tgat refer you to other specialist because autoimmune desease affect every part of your body. I have a good rhumatologist but he rely on other specialist to find a diagnosis with more testing. At least i got referal. We ruled out asthma because treatment not working and all test are done. But he still wasn't sure because cardiac problem is really rare. I have some in my family. The dermatologist is stubborn and didn't want to look at my picture last time. Hope she gonna change her mind this time. If not have to wait the new one that gonna replace her in few months. It's not easy to push all the time to get heard. It's been 3 years of battle and multiple appointement. I'm feeling i'm close but for that i think i need a major organ to fail to find out what i have. Good luck

[stiff19 in reply to Shadow35]

its a long road and its tough, ive had neglect pushing from here to there , referral to specialist cancelled, nothing looked into and id love to have a good doctor.im on a 6 year journey so far , suspected myasthenia but a lot of missed history and current picture from failure to be seen. I was told id be given something for breathing then told just asthma and nothing given or even tested for asthma .I have heart rate problems, nit been seen, dermatologist I see non committal only uticaria. been told have raynauds ,erythema marginatum, livedo reticularis, erythromyalgia possible, and many rashes and skin problems suspecting lyme but tested not lyme but no other diagnosis, told by gp elbows look like psoriasis, inflammation, mouth ulcers and it goes on.its a scary situation when you dont know what is causing it all isn't it. I have jaw problems that come and go 🤷‍♀️. glad you got referral its just so hard and im sorry of your situation too and send best wishes and good luck too 🙏