I have both of those things happen as well and normal blood tests. My hair loss is so bad, it clogs my vacuum and my shower. The acne-type bumps on chin, neck, back, stomach, and chest, often filled with pus, happen very often as well. Sometimes they take a month to go away and sometimes they scar.
No. I get mouth ulcers about 4 to 6 times a year. I get genital ulcers once or twice a year. I have pretty severe joint pain and very bad muscle pain almost all. The. Time. I also have intestinal issues every week to two weeks. My ankles and legs swell often and my one foot hurts a lot to walk on, especially if I have to wear shoes for more than an hour or two. I also have severe migraines at least weekly. My eyes ache most of the time and are very dry. I also have venous sinus thrombosis... Basically blood clots in the veins in my brain which almost cost me my sight. But are doing great now. I also have pain inside my spine from too much spinal fluid building sometimes. On meds that help with that, but not perfect at all. It took them 15 years to figure out I had behcets. Finally I had a doctor that looked at all my symptoms and realized what was going on. I also have hypopituitarism, hypothyroidism, irritable bowel syndrome, and fibromyalgia.
They started with migraines and mouth sores when I was 8., joint issues at 20 after I had my first child, and then blood clots in brain and eye issues at 31, genital sores at 35, muscle pain at 38, everything else at around 38-40, with each thing adding to the next.
None of my blood tests provided answers to Behcet's it was my symptoms that confirmed this for my consultants.
In the meantime have a look at your diet, start removing food groups to see if you get any improvements, remove all refined carbohydrates, bread, pasta, pastry, cakes etc etc. For a month, take a look at what sugary products you eat and drink, even some fresh fruits I have a problem with.
Rinse your mouth every time you have eaten with fresh water.
Hi Suzy I know my neutrophils in blood tests were high, but I was an inpatient and one day a specialist came in and said they were questioning my diagnosis, then they took a couple of biopsies from skin lesions and came back in and said I had neutrophils in my lesions and this confirmed Behçet’s.
Hi Lesley, I was interested in your reply regarding neutrophils. I have been told I have symptoms like betchets, but nothing fully diagnosed yet. How do the neutrophils help with the diagnosis?
I know my neutrophils in blood tests were high, but I was an inpatient and one day a specialist came in and said they were questioning my diagnosis, then they took a couple of biopsies from skin lesions and came back in and said I had neutrophils in my skin and this confirmed Behçet’s.
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