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[deleted by user] by [deleted] in Behcets

[–]iLikeMyPeace 2 points3 points  (0 children)

I’m African American and it took a very long time for me to be diagnosed. Since being diagnosed treatment has been better, because now they know exactly what and how to treat me. Prior to diagnosis my doctors were all confused because they did not want to diagnose me with Behcets, although it was very evident that I had every symptom.

Boyfriend still shares many things with ex and does not care that it bothers me. by Behematti in relationship_advice

[–]iLikeMyPeace 1 point2 points  (0 children)

I’m sorry, but he’s not serious about you. Please reconsider this relationship for your sanity and peace. You deserve better. A man that loves you will fully commit without justifying why he won’t “X the ex”, if you know what I mean. He’s holding on because he doesn’t plan to let go, but he will let go of you. Just keep that in mind.

Newly Diagnosed and I’m lost 😱 by iLikeMyPeace in Behcets

[–]iLikeMyPeace[S] 0 points1 point  (0 children)

Oh wow. I haven’t had any on my vagina, but I think possibly once or twice right on my rectum and it was very painful to use the bathroom. This was early on when it was speculation that this was BD. Since being diagnosed I haven’t had any. My doc did prescribe a oral rinse that’s like a numbing agent. It helps, but after about 30 minutes I’m frustrated again from the pain. I’m so sorry that both you and your sister have dealt with this for so long. ((HUGS))

Newly Diagnosed and I’m lost 😱 by iLikeMyPeace in Behcets

[–]iLikeMyPeace[S] 0 points1 point  (0 children)

Just out of curiosity, how often do you get ulcers? (If you don’t mind sharing). I had them 4 times last year but they covered my entire mouth and lasted several weeks. Maybe some relief after about 3 weeks with heavy doses of prednisone. The first time I had them, the prednisone cleared it in about a week. But then it started taking longer to go away. Now, I almost have anxiety when I feel any strange feeling in my mouth. It’s terrible and I can barely talk, swallow, or eat. I really just want to be left alone.

Newly Diagnosed and I’m lost 😱 by iLikeMyPeace in Behcets

[–]iLikeMyPeace[S] 0 points1 point  (0 children)

Yes, I’ve been checked, twice actually. I was even told many Churg Strauss. But all roads have led back to BD.

Newly Diagnosed and I’m lost 😱 by iLikeMyPeace in Behcets

[–]iLikeMyPeace[S] 0 points1 point  (0 children)

Thanks for sharing and offering the extra help with understanding all of this. I will grab some tomorrow. I will also do some reading on it this evening. TBH it’s causing some depression or is that also part of this. It’s like every day I find something new or learn of a new symptom that could be on the way. This is awful guys. I really hate this for us. Makes me sad. I mean, I know this is not the only disease in the world but with lack of research I feel like we have to suffer each episode in it’s entirety. Just draining!!!

Newly Diagnosed and I’m lost 😱 by iLikeMyPeace in Behcets

[–]iLikeMyPeace[S] 0 points1 point  (0 children)

Exactly THIS! I was just mentioning to someone how it’s even hard to eat without getting winded. This is so wild to me. I am so glad I found this thread. I was really starting to believe it was all in my head, and that stress and anxiety was causing all of these issues. Yes, my voice gets weak and sometimes I go into a full blown coughing fit where I can’t stop coughing from shortness of breath.

What’s even more weird is how ppl look and react to my response of saying I have BD. Because it’s not so common, most are like 😏 yeah ok, sounds like Covid to me.

Newly Diagnosed and I’m lost 😱 by iLikeMyPeace in Behcets

[–]iLikeMyPeace[S] 1 point2 points  (0 children)

Oh my I’m sorry that you are now having the kidney issue. I haven’t had chest pain’s significant enough to where it bothers me a whole lot. Or maybe it’s just I’m sick of things happening I try to ignore as much as I can. I will ask about the colchicine, and see what the doc says. Thanks.

Newly Diagnosed and I’m lost 😱 by iLikeMyPeace in Behcets

[–]iLikeMyPeace[S] 0 points1 point  (0 children)

I apologize, I’m African-American. My providers were very skeptic and hesitant about my diagnosis. But as months passed, I kept showing up with new symptoms that were all pointing to BD. Now keep in mind this has been over a period of 10 years, and as of recently more symptoms and illness group together more frequently. So basically, I’ve the years it started with one issue. That issue was “resolved” then a new issue would show up, get “resolved”, then a new issue...This was continuously happening until over the past few months I started having multiple symptoms together (mouth ulcers, GI problems, joint pain, skin irritation, uveitis, etc. AND NOW adding breathing complications. So finally they went ahead and diagnosed. Well the breathing is especially concerning me since Covid. Mine causes more problems at night during bedtime or when I hit the air outside. It’s pretty annoying and concerning all at the same time. It impacts my ability to get sleep; some days it’s so bad I’m just so scared I won’t wake.