I hope someone else here has come across something similar with an accurate diagnosis! This has been getting worse for about a year, and I have not been able to work for the last five months, as my job requires total attention and concentration. I have been to three specialists who have all said I cannot do my job, and have now been scheduled to see a neurologist.
Here are my symptoms:
Burning sensation on my forehead, face, lips, eyes, throat, shoulders and upper back, stomach, forearms, ankles, feet, buttocks (making it painful to sit down) – feels similar to severe sunburn, raw. This started out only on the forehead and has spread over the last year and continues to spread.
Pain is much worse and becomes an ache, as well, whenever there is pressure on the skin, like wearing a hat, or an elastic or belt around the waist, sitting down, elastics in the top of socks. This is getting worse. It originally was only noticeable when wearing a hat – a slight prickling sensation in the forehead
Dull headache, especially when trying to concentrate, from the top of the cheeks to the back of the base of the skull at the back.
Tinnitus (often sounds like heavy trucks driving by – low, sometimes loud humming)
Visible flushing on the cheeks, nose, forehead, ears, neck and top of the head
Dermatitis on the forehead, either side of the nose, over the top and sides of the skull including in the hair, and in the ears. It looks like cornmeal. Lesions also sometimes appear in the middle of the forehead. The skin on the forehead, especially, feels very tight and dry.
Cortisol levels have been elevated slightly in 24hr urine tests – up to twice the normal level
sometimes there is pressure and pain in the upper chest, right at the bottom and center of the breastbone.
I have been extensively tested for Cushings and am told by all the specialists that I do not have Cushings - the elevated cortisol is a symptom caused by the underlying problem.
I have been scoped top and bottom, have had every kind of cancer test imaginable, have had chest and abdominal X-rays, have had abdominal ultrasound, have had abdominal and skull CT scan.
Any suggestions would be very welcome!