My name is Sebastian and I’m writing in behalf of my mother, who is still undiagnosed after 19 years of suffering and abandoned by all of the possible medical institutions in the region (we live in Bosnia and Herzegovina). This problem is so complex that is almost impossible to describe it properly with less than 50 pages, but I’ll try. The problem started as severe burning of the cheeks accompanied with redness that flared up from time to time, sometimes with no apparent reason, sometimes from triggers such as really warm or cold weather, stress, exercise, cold wind… During a flare up, one of the debilitating problems were the lack of sleep caused by the burning sensation which would become even worse after falling asleep and would wake her up shortly after falling asleep. To help cool her face she used cotton compresses soaked in room temperature sage and chamomile tea. That helped her cope during a flare up period which would last usually around 5 days. Because of that she had to quit her job as an actress because she couldn’t handle the heat of the spotlight and the job couldn’t wait for her while she had her flare ups. Heavier flare ups were usually triggered by elevated stress a day before the flare up. She was first diagnosed with allergies and Urticaria and thus was treated with antihistamines for years. The treatment didn’t work. But although tough to manage, my mom found a way to cope with it and lead a fairly normal life, avoiding her triggers as much as possible and pushing through the flare ups. She had been a patient of all the dermatologists in town and none had any successful treatment for her. Five years ago, we found yet another dermatologist that diagnosed her with Rosacea and tried to treat her with Accutane, Metronidazole based creams, antibiotics and other typical medication for Rosacea. None of them helped (one time, long lasting antibiotic treatment seemed to have smallish benefits, but everything got back as soon as she stopped taking them… every next time she took antibiotics, the positive effect didn’t repeat). Furthermore, Accutane treatment made such a severe adverse reaction that the burning sensations were constant and unbearable for days and had to be stopped with a corticosteroid Diprofos injection. That stopped the reaction in a day or two. She also had tried laser Vbeam therapy that was usually prescribed for Rosacea. She responded badly to it as well. That’s the short version of the past 19 years, now comes the last 11 months. On the December 20th last year mom started having a flare up that for the first few days looked much like her standard flare up. After a few days she noticed that her face started acting different than usual: it wasn’t calming down as it did before and started developing dark red to even purple spots that varied in size (about 1-5cm in diameter). The burning sensations from those spots was much worse than normal and was hard to cool down. The spots change positions on the cheeks and will grow and make the entire cheek dark red (and burn severely) if not cooled in any way. From that time up until today, her face has to be cooled down constantly so that she can bear the burning. We used to cool her with the same cotton compresses soaked in tea, but now it couldn’t be at room temperature because her inflammation required it to be colder, but not too cool (for example she couldn’t bear ice on her face) because it would inflame her even more, so we had to put ice cubes in the tea to regulate its temperature. Her face gets so hot that the compresses would heat up in just a few seconds and must be changed every 15 seconds in order to work… both day and night (with nights and sleeping still being worse than days). My dad and I work in shifts so that we can cover the whole 24 hours. We’ve been to all of the possible dermatologists and rheumatologists here in Banja Luka and none of them had ANY idea what could cause this problem. One dermatologist did cryotherapy on her face, which made even more damage to the skin leaving the cheeks covered in erosions which made the primary disease hard to extinguish from the changes done by the liquid nitrogen (cryotherapy). Even now the skin is eroded and red from it but it looks a bit better than it did in January when the therapy was done, so now the primary disease with the purple-dark red spots that unbearably burn are again quite visible. We’ve been to Belgrade which is the capital city of Serbia and the biggest medical center of this area. At the rheumatology center the doctors tried to find if it’s an autoimmune disease such as Lupus erythematosus, Dermatomyositis, Scleroderma ect. All of her blood tests: hormone levels (they suspected it to be from menopause), biochemical and immune factors are all within normal levels (I have all of her results form so I can send any of them via email if needed) and suggest that she doesn’t have an autoimmune disease. Only Anti-Ds-DNA is always slightly elevated, but nothing else. Now even the dermatology center in Belgrade abandoned us. They made 5 skin biopsies: 2 Lupus band tests, hystopathologic and differential, and all of those were negative. The biopsies also showed that she doesn’t have Rosacea (so it was a wrong diagnosis all along). Not knowing what to do with her they discharged her with no diagnosis as every other medical center did. She doesn’t cool herself with tea compresses anymore, because the system is quite complicated (requires large amounts of tea, ice and compresses daily) and being soaked night and day for months also damaged the skin, so we found an another system: cooling with large plastic cups filled with cold water. The temperature of the cups can be regulated by putting ice cubes in the water. During the past months doctors tried a lot of medication (antibiotics, immunosuppressants- both Chloroquine and Azathioprine made huge adverse reactions, various corticosteroids, all with no effect), which I can all list if required. She has been on corticosteroid injections (20mg of methylprednisolone im) for all this time, but with pauses. She had a few remissions when the burning wasn’t completely gone (we thought that it might be from the injections, however we aren’t sure), but was bearable so that she can function at least a little bit during the day. However the remissions never lasted long, because as soon as she got better the doctors tried to get her off the injections, but with the dose lowering she would get the withdrawal syndrome where the burning gets even worse than before. She had about 4 remissions and rebounds so far, but even though she’s still getting the injections we haven’t been able to calm down the inflammation back to a remission after the last rebound, so her current state is really bad. Being desperate we’ve read so much about all of the possible facial disorders, so we know a lot not, but we still need help. Even though I have large medical knowledge, I’m still a physicist, not a doctor, so I can’t diagnose her nor prescribe her with anything. We suspect that, considering the negative blood results, it could be a neurological disorder, such as Atypical trigeminal neuralgia, so we’ve done an evoked potential test and MRI. The MRI was done and all they saw was that her meninx is somewhat thickened, but they connect that to my mom’s condition (I have the video of the MRI, so I could send if required). This is the short version of my mom’s medical history. We would do anything, go anywhere just to get proper help because our family is completely wrecked and my mom can’t stand the pain anymore after all this time. We need a doctor or medical institution to lead us, to diagnose my mom’s condition. I’m also trying to find medical organizations that might help, but can’t find any. So please, if you have any kind of medical advice or any suggestion about who we can contact further, please tell. Any information is useful. My email is sebastian.***@**** Regards, Sebastian