My Behcet's Disease Story

Рет қаралды 2,967

2 жыл бұрын

Hi! My name is Ellis Michaels and I was diagnosed with #BehcetsDisease (aka #BehcetsSyndrome) in 1997. In this video, I tell you a little about my #Behcets story.
Finding Happiness Through Pain and Embarrassment: My Life With Behcet's Disease - A Memoir - ellismichaels.com/behcets-mem...
Behcet's Song (You're Not Alone) - album.link/behcetssong
Behcet's disease articles - ellismichaels.com/category/au...
Behcet's Disease Uncensored podcast - anchor.fm/behcets-disease

Пікірлер: 42

@donnagraham4050 Ай бұрын

Fellow warriors unite

@mikedavis4226 2 ай бұрын

God bless you and get you bencet’s free........Amen

@johnkurek3948 9 ай бұрын

Thanks for your video of been struggling with this for years and years now and I can’t relate more to your video than I’ve ever been able to with anyone

@behcetsdisease 9 ай бұрын

I'm sorry to hear you've got Behcet's, too, but I'm glad you can relate. I know how lonely having this disease can be. Thanks for watching and for the kind words

@rebelliouslogic2705 Жыл бұрын

I woke up blind once too.. just like all the other test. This one came back normal 🤷🏾‍♂️

@behcetsdisease Жыл бұрын

It's the craziest thing. With Behcet's, your whole body can be falling apart and you can still test negative for everything.

@rebelliouslogic2705 Жыл бұрын

@@behcetsdiseasemy test are sometimes better than average 😂😂

@behcetsdisease Жыл бұрын

@@rebelliouslogic2705 Haha!

@jatinsethi8739 9 ай бұрын

Did the blindness go away itself or what did you do?

@jatinsethi8739 9 ай бұрын

@rebelliouslogic2705

@teecop4735 Жыл бұрын

Omg you sound like me ! I’ve had this curse twenty years ! Now my son has it ! I can’t. Some days I don’t even want to go on anymore I’m tired now ! I never complained but now I can’t walk wheel chair and home bound .. I can’t do much my bedroom has become my prison cell ! Sorry if I sound so morbid it’s so hard now .

@behcetsdisease Жыл бұрын

I'm sorry you've gone through what you have - your son, too. That's my biggest fear: that my son has Behcet's, too. But so far, he hasn't showed any symptoms, fortunately. I've been bed/housebound for periods of time (like when I've gotten massive clots in my legs) and it's awful. So I really feel for you. Hang in there :)

@teecop4735 Жыл бұрын

@@behcetsdisease thank you so so much , in all the years I’ve had this I have never spoken to anyone else who had this thing you are the first ! I don’t know why I finally did I think it was your story . It was like mine . I had a bi pass left leg when I was 40 years old and perfect shape size 4 and exercised everyday . The fatigue was crippling when I had work . The DRs had n bedside manner . They told me I was looking for drugs when all I wanted was yes relief but also an answer . My husband and I thought I was cracking . The boils , canker soars , Folikulitis was and is miserable . The rash that grows in dark sweaty places I have three different rashes as we speak . Lymphedema both legs I’m in. A wheel chair and finally feel like giving up . My son has a rarer cancer only caused by this thing see I hav eit all over he has it if the GI track I was so sick yet I had to try to help him when he was screaming for death it was crazy . Your story hit me like someone else knows thank you !

@behcetsdisease Жыл бұрын

@@teecop4735 I'm glad my suffering has not been entirely in vain. I begged for death for over a decade when I was in constant pain. Things for me have gotten better, though. And they might for your son. I sure hope they do. Don't give up! Either of you! I know it's hard sometimes but you've got to keep pushing forward, taking things one day at a time.

@teecop4735 Жыл бұрын

@@behcetsdisease thank you 🙏 I won’t I can’t I have a great husband and daughter still , I’m waiting now for all the infections to stop so the dr can us this drug in me it like an IV but I can’t have it till I’m cleared with no more infections because it can cause more problems . But thank you for your time . May you have all good days !

@vegardhp1 2 жыл бұрын

I had weird symptoms for a while. I had multiple episodes with swollen testicle and sores there+ sores in the mouth that I have had as long as I could remember. I also got erythema nodusum. Unfortunately I ignored all of these symptoms until my leg swoll up exactly a year ago and turned out it was a blood clot. Time went by and those other symptoms came and disappeared until last summer. The sores didn't go away and I went with almost constantly swollen red spots on my legs(erythema nodusum) it kind of calmed down but then I got neck pain. Mild at first but after like a week it got intense. I got fever and the erythema nodusum came back. I got to the doctor but they didn't know what it was. They took MRI CT and all of those things. After a while they found out that it was a blood clot which they thought was weird since I was on blodd thinning injections already. Then they knew something was wrong and they did research and looked at rare diseases. The doctor called us and asked if I had any of those sores, I said yes and we got called in to the hospital and they found out. Put me on intravenous prednisolone like 70mg or something, colchicine, azathioprine. I have heard and read that the disease some times kind of burns out after time, so I am hoping that I will have few episodes of it.

@behcetsdisease 2 жыл бұрын

That's true. For a lot of people, it hits hard at first then fizzles out over time. For me, my teens were the worst by far. I've had some clots in my 30's, but the oral and genital sores stopped in my mid-20's. The most important things you can do are take care of yourself, keep your stress levels as low as possible, educate yourself, and connect with others. It sounds like you're doing all the right things. Hopefully you'll be one of the lucky ones who the disease goes away over time.

@vegardhp1 2 жыл бұрын

@@behcetsdisease i hope so. I have been working out pretty hard with weights without any problems+ I am cutting out as much sugar as I can to reduce chances of inflammation. I am also starting to train cardio. Hope I can be able to work out as I want without it causing issues.

@vegardhp1 2 жыл бұрын

The mouth sores, I think I will keep having. Have had them my whole life and my mom also gets alot of mouth sores

@behcetsdisease 2 жыл бұрын

@@vegardhp1 You never know. My mom also used to get them. For me, I always had a mouthful of sores until about the age of 25 when they just stopped. Weightlifting is excellent! Good for you. I didn't start lifting until I was 27, but it changed my life (strength, confidence, muscle, etc.). I generally maintain a high-protein, low-carb, moderate-fat diet. It really sounds like you're doing all the right things. One last thing: don't stop learning. You're obviously quite smart. If you haven't figured out that the healthcare system sucks yet, you will. I could see how bad it when I was still in my teens. If you want to live a good life, you're going to need to learn as much as you can about Behcet's and your body in general. Don't rely on doctors. There are some amazing ones out there but there are a lot of terrible ones as well. The more you learn, the better off you'll be.

@DevilQTRx 4 ай бұрын

sad my left eye got almost fully blured since last year and i was diganosed with behcet, i have same as ur issue with ulcers but no joint pains

@justcraftingaround7467 2 жыл бұрын

I found out when I was 40. I have had the symptoms as long as I can remember but when I was 37 was when it got bad. I have uveitis. Keep having stranger things happen. I’m sorry to hear your eye doctor was a dink! Thanks for sharing. My story is long as well; pretty much close to yours. It is so hard because it’s kind of a lonely disease. Maybe they all are?. Not to get into too much detail but I have seven other siblings six of which are addicted to painkillers so I refuse to take any over-the-counter pain medication so my dear husband (Jeff)started growing marijuana for me which is legal in the state of Maine and it has helped tremendously. With the pain and stress of this disease. Question: did you ever be diagnosed with H-pylori? I ask this because I have been doing a lot of reading and it seems like they’re starting to discover these parasites and bacteria like H. pylori that causes the immune system to literally go into overdrive which kind of kicks in the Behçets. I don’t really know the dynamic behind all of it I’m still reading about it. Thank you for sharing your story.

@behcetsdisease 2 жыл бұрын

Thank you for the comment and thanks for watching. One of the next videos (not the next but the one after that) I'm going to upload is about cannabis and Behcet's disease. It's helped me sooo much. I'm sorry to hear you've gone through this, too. It sucks. And to answer your question, no, I haven't been diagnosed with H-pylori, but I will look into it. Feel free to reach out if you have any questions. I've got 25 years experience (more, really) with this oh-so-fun disease lol. Be well!

@justcraftingaround7467 2 жыл бұрын

@@behcetsdisease thank you. I will.

@jiyadey3823 Ай бұрын

I still don't know i have behcet's disease or not. Last month i got some ulcers on vulva and mouth ulcers. I frequently get mouth ulcers as atleast one time in two months. Last month i got 5 ulcers in my mouth. And this month one. Also i have severe knee and back pain. When i got genital ulcer i went to a gynaecologist..she suspected behcet's but then i went to other gynaecologist they suspected its uti because as i had ulcers on my genitals so i had a burning sensation while urination...my crp was 24mg/dl then after 5 days it decreased to 3 mg/dl. So is it behcet's disease? Also sometimes i get headache (Edited) - last month when i got those episodes of ulcers i got some on palms too

@behcetsdisease 28 күн бұрын

I'm not a doctor, but what you're describing certainly sounds like it could be Behcet's disease. For doctors to make the diagnosis, generally 2 of the following 3 must be present: oral sores, genital sores, eye inflammation. As far as sores down there, in women, the vulva is the most common location they're found. So I'd suggest seeing a rheumatologist - a doc who specializes in diseases like Behcet's - and go from there. Best of luck to you!

@r.m.b5636 15 күн бұрын

سلام. به یک روماتولوژیست مراجعه کن. آزمایش‌های hla b5 و hla b51 رو انجام بده مشخص میشه اگه بهجت داشنه باشی. بعضی وقتها علائم خیلی متفاوتن ولی آفت دهان و آفت تناسلی خیلی رایج. متاسفانه منم تازه متوجه شدم این بیماری رو دارم😢😢😢

@jiyadey3823 8 күн бұрын

@@r.m.b5636 can you please tell this in English or Hindi?

@jiyadey3823 8 күн бұрын

@@r.m.b5636 how did you diagnosed? Through symptoms only?

@r.m.b5636 5 күн бұрын

@@jiyadey3823 Hello. This disease is diagnosed based on the symptoms and response to a series of drugs and hla b5 and b51 tests. Unfortunately, I am also suffering from this disease. My symptoms include mouth sores. Fatigue, lethargy, body pain, body burning, and mood swings. Imam may have different symptoms in different people, but the main symptom is mouth sores and it is usually more severe in men.

@nukhetyavuz Ай бұрын

neanderthal is the trait

@r.m.b5636 15 күн бұрын

من هم تازه متوجه شدم این بیماری را دارم😢😢. زخم دهان. بدن درد . ناتوانی حرکتی علائم من بدشانس هیتن😂😂😂

@saradimora 9 ай бұрын

I have fucking glaucoma because of all the prednisone for my uveitis

@behcetsdisease 9 ай бұрын

Well that certainly sucks. If it makes you feel any better, prednisone caused half my teeth to fall out and gave me hundreds of stretch marks all over my ass. So at least you're not alone in pred causing you all sorts of problems. But I'm sorry you've gone through that.

@cori.0616 8 ай бұрын

IM SO SORRY, I HOPE YOU OK, WHEN I FIRST READ WHAT YOU WROTE I STARTED TO CRY , ITS LIKE I CAN FEEL YOU HURT YOUR PAIN YOUR ANGER,BECAUSE IM WITH YOU ,IM JUST AT THE POINT WHERE I DONT WANT TO BELEIVE THAT THESES RIPS AND TEARS IN MY VAGINA AREN'T REALLY HAPPING! I FEEL LIKE MY MIND IS NOT CONNECTED TO MY BODY BOTH ARE PRESENT ,BUT THEY DONT COMMUNICATE WITH EACH OTHER!

@cori.0616 Жыл бұрын

I would have. enjoyed your story if you hadn't used curse words,But I too have it,I just dont swear about it ,But thank you for your story.

@dave_by_day7632 Жыл бұрын

I don't mind the swearing at all. I think people who've had very difficult and burdensome lives are more likely to casually swear. The swearing can be understood like those people are being genuinely themselves.

@behcetsdisease 8 ай бұрын

That's just it. The last thing I want to do is offend anyone. But, at the same time, I want to be authentic. And when talking about something as horrible and painful as Behcet's, it'd be impossible to be authentic AND not swear. I DO try not to swear excessively, though. But when I'm angry, every other word that comes out of my mouth is a swear. I inherited that from my dad haha.

@cori.0616 8 ай бұрын

I CERTAINLY APPRECIATE THAT YOU ARE BEING YOU! I RESPECT THAT AND I THANK YOU FOR BEING YOU! PLEASE DONOT FRET IM NOT AT ALL OFFENDED! THIS IS WHO I AM! I DID RELATE ALOT TO YOUR STORY AND I THANK YOU FOR IT! I JUST DIDNT REGISTER WITH SWEAR WORDS! BUT HOW ABOUT THIS? ,PLEASE FORGIVE ME FOR THE WORDS I USED? YOU BE YOU! BECAUSE EVEN THO I DONT KNOW YOU I BET YOUR AN AWSOME PERSON! ANYWAY WE BOTH GOT BACHETES, SO YOU KEEP WRITING AND ILL KEEP READING ! PLEASE TAKE CARE OF YOU, YOU 100% DESERVE IT! THATS WHERE I AM RIGHT NOW, TRYING TO CONVINCE MYSELF OF THAT EVERY DAY!

@behcetsdisease 8 ай бұрын

@@cori.0616 I appreciate that. And thank you for all the kind words. I know swearing is something that many people don't like, but I'm glad it didn't offend you cause that would've been the last thing I wanted to do. Thanks for taking the time to write this. You deserve to be happy just as much as I do - as much as anyone does. Don't forget that.