Have retinal vasculitis abd branch retinal artery occlusion of my right eye. It was diagnosed last year but I was told this had been "brewing for a very long time". I was sent for an emergency rheumatology evaluation because the retinal specialist could see autoimmune type cells in my eye. 43 vials of blood and MRIs and CT scans were mostly negative and I still don't have a diagnosis. I have my first ulceration in my mouth now it is pretty large and not healing going on 3 weeks now. I have had a lot of sores rashes boils blistering you name it to my feet,face genitalia and random other areas over quite a long time. The past year I keep getting boils or folliculitis type painful sores on my peri area but not on the vagina itself. Behcets was on a short list of diagnosis but was quickly ruled out because of a lack of oral lesions. Now I have one but I'm also a smoker which I have read inhibits oral lesions fur unknown reasons. I have just about every other symptom of BD and according to ICBD criteria score a 6 without counting the oral lesions at all.
I'm desperate to find answers. I'm 45 and I've been sick my whole life. Gastro problems with Marlena spots all over my intestines. I could go on and on. My vision is blurred again in my right eye and I will be making an appointment ASAP for this. I can't afford or handle another you are fine just because my tests don't show what is wrong with me.
I've been convinced I have an autoimmune disease since the symptoms went into overload about 11 years ago. I know Behcets is by exclusion and there is no test. I have begun taking pictures.
Any advice on getting a diagnosis in the US would be extremely helpful!! I'm seriously concerned about losing my vision and a host of other symptoms I'm having. The pain has become a burning hot sensation that it different than my previous pain. Anyone else experiencing hot tingling pain mostly in arms and hands but generally all over?
please help, im 17.
Possible Behcets? HELP.
New diagnosis and colchicine.
Hi. Your situation just sounds awful. I live in the uk so can't offer too much advice but have you been in touch with the American vasculitis foundation? My hope is that they could offer support and suggest who you might see to get a diagnosis.
I am diagnosed with Behcet's but very rarely get any kind of ulceration. It is crazy that anyone asks that you fulfil all of the criteria. Are you on any meds currently for symptoms? Any treatment for your eyes?
Sounds to me like you do indeed have an autoimmune problem. It could be Bahcets, but it also may be So Sjorgan's Disease which is also autoimmune.
nhs.uk/Conditions/Sjogrens-...
I received no treatment for my eye because no autoimmune disease could be found and my one month follow up showed some improvement. I'm on a lot of medications but nothing for any autoimmune disease. The few times I've taken steroids for respiratory infections or foot ulcers is really the only brief periods of time I feel good but they were short low dose courses.
Sjogrens I test negative for the markers. The ENT I saw last week said it too but again no diagnosis.
thank you both for replying. I'm going to see the retinal specialist then I will keep pushing for a diagnosis.