I found it frustrating to have an illness that others just don't understand. So here i am trying to connect with similar people. I have looked at many community sites and decided that this one is for me. I hope to get to know many of you here.
I have either Behcet's or a form of blistering skin disease. My Doctor said it was Behcet's but then decided to wait for a nice big pus sore to biopsy before completely confirming it as Behcet's. He wants one of the big ones not the tiny ones i get all the time.
Very frustrating this waiting game, its been years now with these symptoms. I want a final complete diagnoses so i can focus on what will actually help.
Don't know how to sign posts.
Hope to hear from others.
Leena
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LLocke
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I am glad you reached out. We can empithize with you and long wait of diagnosis. Please keep up dated with your results. If you do have BD there are some treatment options. It is a shock i realize. Especially the non-visable symptoms. We all have some of our daily life tips to helps you get along. Just lets us know what you would like guidance with
Hi! Yes, it is comforting to know that there are people who understand how you feel. Indeed, the right diagnosis would be the best foundation for treatment. Good luck with your diagnosis.
In the meantime, there are some websites that may be useful references. Here is one among many:
Welcome - yes a hard diagnosis to get and it seems so many different things to add up..... Hope they come to a conclusion soon so you can get the right treatment. Took over 2 years to get mine but have never had a biopsy of a skin sore - only a mouth ulcer that showed nothing.... That is the problem with Bechets is there is nothing to come up on any tests.... Frustrating times....
At one stage my diagnosis was in doubt, but I had a biopsy done on one of my skin lesions and, I will stand corrected on this, but I believe that the area had neutrophils and that is what cemented the diagnosis.
Hello Lesley. I found this sight because of you. I wanted you to know that.
I am a sister in the Magna congregation here in Utah. I typed in the search engine Jehovahs Witness and Behcets to specifically find a spiritual sister/brother dealing with a similar disease. Your post came up from this site and i found you.
Hope you dont feel stalked.
I prayed to Jehovah the day previous for someone who also loved him that i could talk about this with. It is such a rare disease that no one around here has anything like it. The spiritual family i have here are very loving, its just they really dont understand what i am going through.
Hope to hear from you again and really anyone from this site. Its a relief to be able to speak with others dealing with something so odd.
I was sick for 50 years before I was finally diagnosed - I had a wide, varying range of symptoms and nothing showing up on tests, so pretty much all my life they thought I was a hypochondriac! My ulcers and skin lesions are small too, so didn't ring Behçet's alarm bells with doctors like larger ones would have done.
Because I was left to my own devices for so long, I had to come up with natural ways of controlling my symptoms. I have had good results with eliminating certain foods that seem to aggravate inflammation. I find gentle exercise (yoga and swimming) and activity are good ways of coping too: the fitter I am before I go into a flare, the better I am when I come out of it. If I let myself get run down, I really struggle to recover from flares. So I try and live as healthy a life as possible, and eliminate stress as far as I can.
Good luck with getting to grips with what is causing your illness.
Hi and welcome to the site. I guess your doctor is doing the biopsy to rule out the blistering skin as there is no definitive test of any kind for Behcets. You didn't mention any other symptoms so it is not possible to give you the advice or answers you crave. I do hope you get some answers soon. Keep in touch with the site though.
There are so many symptoms. I guess thats why i did not at first list them.
This started November 2012 with tongue sores. so big so many and they dont stop, its every day. They are extremely painful. So many at a time i dont bother counting them. From enormous size of a silver dollar to tiny pin prick sizes. Started to get them on inside my cheeks and roof of mouth since about summer 2015. Along with the tongue sores started same day (2012) with the vaginal sores, which after about 1 years time had destroyed the outside area of my urethra. I lathered up with Bag Balm every day to encapsulate the area. Later my Oncologist for my previous Uterine cancer said that was the exact thing to do. He is the one who gave me the referral to the specialist i am seeing about this disease. Bloody eyes started about two months later from the tongue and Vaginal area, so Jan/Feb 2013. Skin sores of varying types, pustule, folliculitis, vesicles, bulla, nodule, furuncle(boil), and skin ulcers started in January of 2014. Others skin sores I dont know what to call them, enormous marbling bruise bumps, and enormous bumps that have necrotizing skin on top with no discernible bruise. New joint pain that did not exist before started February 2014. I would say the extreme exhaustion started around the time the skin sores started, Jan and Feb of 2014. a bit tired before but nothing as extreme. Right after my Uterine Cancer was removed extreme intestinal pain started. That was in 2009. So really i think this could have begun as far back as that. And off and on headaches that sometimes come with wavy lines like the Outer limits TV series back in the 1960's. Headaches started about Feb. 2013. Hopefully i have not forgot anything to list here and listed the correct dates. Dont want to confuse anyone with wrong dates.
My Doctor has ruled everything else out except Behcets and possable skin blistering disease. His words. Thats why he wants a culture and biopsy of one of the big puss filled sores not the tiny pin head size i have all the time at least somewhere on me. I guess that will definitively rule out a pemphigoid or pemphigus.
Behcets, is as we all know is notoriously hard to diagnose. You may be told many times that yes you have it and then be told no you don't have it. There are no tests that are conclusive. Be prepared for that and when you think you're back at square one you'll find a very helpful Dr and you're in the running again. It is like all difficult, unusual diseases very frustrating for the patient. But this forum is great as most of us who have had it for years have learned the hard way, and you can pick up so many tips and moan about things and we're with you all the way. Good luck and don't put up with rubbish drs , ask to be referred to a different one of necessary. Xx
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