My Diagnosis

[SENSE8]

Hi, My name is Tanya. I'm 34 years old and I have Bechet's Disease. I was just officially diagnosed this year after a long often times strenuous journey of nearly 10 years. There were times when I thought I would never get an answer to the neverending cycle of ulcers,rashes,fevers and joint pain....or whatever else decided to show up. I went from being the social butterfly to being in a cocoon. Bounced from doctor to doctor (dermatologist, rheumatologist, hemotologist,infectious disease,etc...) no answers. Thankfully my primary doctor really went to bat for me, he researched and studied and low and behold he found the answer. Leave it to me to have some rare autoimmune /autoinflammatory disease. I can't ever do simple. Aside from the ulcers the uveitis was the clincher. So here I am now with this horrible disease that I wouldn't wish on anyone not even my worst enemy. However; I'm glad to finally have a name to put on this monster that I'm faced with every day.

[billi]

Hi Tanya and glad you've found this site. It is also good to hear you have a sympathetic doctor with some knowledge of BD. I have suffered with BD for 30 years and it takes most of us at least 12 years to get a diagnosis. Having said this, over the years I have seen vast improvements in diagnosis, research, knowledge and meds.

This is a good site and there are Centres of excellence thanks to the Behcets Society and we members who subscribe to the newsletters and also give donations once a year. You should look on their site as it is good info for you and your doctor the address is....behcets society.org.uk.

All for now, take care,you are not alone anymore!!

Billi

[SENSE8 in reply to billi]

Thank you Billi

[Andrea58]

Hi,

I am glad your doctor did his research. I am 57 and was just diagnosed this past spring after a severe episode of meningoencephylitis. I was hospitalized with esophageal ulcers for the first time at six. I was 12 when I had my first bout of genital ulcers and was totally humiliated and shamed because the gym said I had herpes. I was known as a slut in HIgh School as a result and this was the 70's. I was also sexually abused which I believe contributed to me getting this disease. My family disowned me. I always had canker sores in my mouth. Evidently, or it seems, esophageal ulcers are not as common as the other symptoms but if I am wrong I hope others will correct me. Throughout my childhood I got shots of gammaglobulin every month in an attempt to prevent what I now know to be flares. I cannot tell you the number of AIDS tests I have had with the last one being four years ago. I have had pericarditis, blood transfusions, bloody stools requiring hospitalizations, nucrotic skin after surgeries, erythem multiforme, pneumonia etc. I am glad to have a diagnosis but can't it wait to finally see a doctor who knows about this illness. I am so frustrated in my rheumy. I tell her my pain and she wants to put me on antidepressants which I refuse. They are not good for me. She won't prescribe anything for pain or joints. I had 3 broken ribs and still nothing for pain. This is such a frustrating disease. Sorry I turned your post into a rant. This is a good place for support and ranting. Welcome, my friend. Sorry about your diagnosis.

[SENSE8 in reply to Andrea58]

It's OK I understand your frustration. I'm the only patient both my GP and rheumatologist have seen with this disease. After speaking with my mother my GP believes my symptoms started when I was a a child as I often had mouth ulcers and was hospitalized with inflammation of my intestinal tract several times. As an adult I was tested for AIDS,,herpes and syphilis multiple times. Told I had fibromyalgia.... or maybe it was all in my head. But you can't fake the ulcers or lesions! I'm so sorry you were sexually abused, I know the guilt and shame that you had to overcome. ...I too was sexually abused as a teen. I'm sorry you're family wasn't there for you.