I've had oral ulcers (canker sores) all the time, even growing up. Thinking they were normal, which mostly they are. But when I was in highschool, I would get 5, 8, 12... at a time. I always had GI issues. Diarrhea was normal, I always thought I had IBS or Crowns, but was never diagnosed, lets just say I was a frequent flyer in the nurses office. I also had many uncomfortable/painful body lessons, which i could never explain and was too scared to point out.Then came the infamous major episode of epiditymitis followed by large penial/scrotal ulcers. As I was 17/18, and rarely sexually active, I was scared yet skeptical I had contracted an STD. But that seemed impossible to be as I had always used protection was not very sexually active, especially not with more then one/two female partners at the time. I went to the ER and the doctors and nurses took my blood work, urine samples, ultrasound of my testicles, etc. They confirmed I was having epiditymitis, 2 open ulcers, major inflammation, and most importantly, they didnt know why. I was given meds to treat the acute issues, but my treatment stopped there.
Later I had symptoms of erethema nodosum, skin lesions, and just inflammatory bumps/nodules and sores all over my skin, legs, arms, back, shoulders, head, neck... big red pimple like nodules that hurt like bruises and wounds. I immediately went to and allergenic and dermatologist. All negative results, doctors astonished with no answers as to why. No allergy, skin condition, bug bite, exposure to anything.
Finally, after 3-4 years of having non stop symptoms all over my body: ulcers/sores in my mouth, on my genitals, on my skin, immense testicular pain, arthritic pain in my joints (at 18), days i just lay in bed because the unexplainable pain i was having would disable me. The pain from all the sores in my mouth makes eating just not an option. Either way after several years of awful symptoms, during an ER visit, I was advised to see a rheumatologist. After doing so, I was the happiest, with bitter sweet news. I had pinpointed what was happening to me, but the bad news, doctors didn't know why, there is no cure, and its a chronic disease. The doc told me I had Behcets disease, as the classic "Triad" of symptoms of the oral, genital, and ophthalmic ulcers. But I had no eye involvement...yet.
It was soon after being first diagnosed and placed on a anti-gout medication called Colchicine, where I had my first visual attack. Not to get into my personal life, one day while looking at a screen I noticed my vision getting blurry. But not all of my vision. Just a distinct spot right in the center of my eye. And at first I rubbed, washed, thought I scratched... but eventually it kept getting worse and worse so I went to the ER, again... and confirmed I was having anterior and posterior uveitis. Immediately called my rheumatologist and he upped my dosage. It wasn't easy, especially with the GI issues, and the medicstions' GI side effects.
I had two more episodes with my eyes, and then my left one was also involved. Which was when I decided to see another rheumatologist, who only told me the same exact thing as the first one was saying. Now that I was positively diagnosed, the problem was the treatment. And with so little options, even the doctors felt... empathetic.. to say the least. I found my 3rd rheumatologist who suggest a 2nd medication, on top of Colchicine, called Azathioprine. Both together twice daily everyday. This combination has been the most productive so far.
It's scary to think that I can have neurological involvement, and far worse symptoms, even life threatening ones. But the ones I have suffered and my vision have already taken a tol. I am lucky the agency I work at is very understanding of my situation and allows me to take days off when I am suffering from an episode or flare. I control outbreaks with Predinisolone and pain medications.
Behcests disease is a very rare, life altering, life threatening, painful disease. I chose to go to nursing school because I was motivated to help others as I was being cared for everytime I visited the emergency room. I try to give back as much as I can and want to continue my education to try and learn everything about my personal issue. With the hopes of helping others
Nursing school loans are already drowning me and taking almost half of my paycheck. If I could have a little help financially. I can feel confident in working part time and covering my school cost. Hopefully with my disease under control everything will go smooth, but the disease is idiopathic and sporadic, coming and going as it pleases. Im young, motivated, and want to help others. If I can reach my goal or even surpass it, I will definitely be putting in some of the money into Behcets Disease research.
Thank you for any and all help. My heart is with you.
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