Im new here

So I am completely new to this website. I am a 19 year old, white female. I say white and female because I know Behcets typically runs in middle eastern men, or at least that is what I have read. I currently am called a "medical mystery" according to several autoimmune specialists. However, I have had a couple specialists tell me they think I have Behcets disease, but that there is no way for them to test me to find out for sure. I am on here to see what y'all think. From the time I was 15 up until a little after I turned 19 I was on the highest amount of estrogen I could be on in birth control. My flare ups coincide with my period. Anyways, this birth control put whatever I have into remission. The birth control I was on made me depressed, which caused my doctor to put me on an antidepressant. With being on this medicine for so long I started to feel like crap so I got off of it. I have been fine for almost 8 months with no medicine to keep me well and then the last 2 periods I have had have been like my own living hell. The disease came back. With each period the flare ups have gotten worse. I am now going to list the symptoms I have been having in hopes that I can get some opinions as to what I have. By the way herpes has been ruled out. Also any STD's.

My symptoms consist of mouth ulcers on the inside of my lips, under my tongue, on my tongue, on the roof of my mouth, and in the genital area and rectum area. I have also noticed that my eyesight becomes blurry when I have a flare up. I get headaches where it is almost like I can hear my heartbeat in my head. My joints occasionally ache. I also gets sores in my nose and around it. The outside of my lips also get sores that are dry and scaly. Also I get these red parts of my skin that swell up real big and itch terribly. That is one thing I forgot to mention. I can usually tell when I am about to have a flare up because there is the terrible itching sensation that will not go away until the sores appear, and even then it still itches. Now back to the mouth ulcers. I have noticed that the roof of my mouth almost like gets a really big water blister. Eventually this blister/ulcer ruptures and then fills with puss and blood. Does this sound familiar? This is where I am at right now. I know I can't go to the internet for a diagnosis, but I currently do not have any healthcare benefits due to my father not being able to work because he was in a car wreck where he almost died. I was on Medicaid for awhile, but that ran out due to me turning 19. Anything would help. I think I can deal with being sick, I just hate not having a name for what is wrong with me or how to treat it with something other than medicines that make me feel terrible.

Thanks

8 Replies

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  • Hi Maddie and welcome to the site. You poor girl, you really have your hands full. Behcets is a disease thought to be from the Silk Road route from and to the Middle East and Asia. It's name is that of the doctor who discovered it, he was Turkish. You can find out much more by clicking home at the top of the page. The society here in the U.K. Is quite strong and has done so much over the last 35 years. We have this site, help lines and three Centres of Excellence specifically for Behçet's disease in different parts of the UK., so we are very lucky.

    It is a complicated disease and has many symptoms but as yet sadly there is no specific test to prove it or not. Diagnosis is usually made by a having a series of three symptoms out of five within 6-12 months. It took over 12 years for me to get a diagnosis and I believe the average time now is about 3-6years, so great improvement. I started with BD over 30 years ago and suffered greatly for at least 8 years and nobody had any idea what was wrong. Then somebody suggested I see a rheumatologist and after 4 years I had a partial diagnosis (due to the fact that other patients did not have some of the synptoms I had), but as time passed and more research it was finally decided I did have BD. Many of my original symptoms are now deemed to be part of BD and we still have some ways to go.

    Please stay strong and positive as whether is is BD or not the most important part is not the name but the treatment. The usual primary doctor for BD is a rheumatologist so I suggest you start there. Also start a diary of your illness each day your symptoms, how you feel, also take photos of any ulcers, blisters or rashes, anything unusual and take all of this with you to any doctors appointment. Also helps to have someone with you a family member or friend to remind you of questions to ask and give you general support.

    I have managed to have three children, work at least part time, divorce and remarry, so there IS life with this disease. Stay positive as research In many autoimmune diseases is improving day by day. If you need to talk privately you can send a private message to me or anybody else who feel you would like to talk with. We have people on this site from the USA, Australia, Canada and many other countries. You are not alone and you will learn how to manage this disease. I do hope some of this puts your mind at rest.

    Take care

    Best wishes for the New Year

    Billi

  • Hey ther girl. I live in the US as well. Do you live in a state with Medicaid expansion? If you do, you may still qualify for Medicaid or at least get it for very very cheap. If you live in the South you might be screwed though. Sorry you're in pain. When you get blisters in your mouth try salt water washes and witch hazel pads (you can get them at Walgreens or CVS) for the irritation down below until you can get proper meds. It definitely sounds like you have Behçet's disease. Even though it mainly affects people along the Silk Road, you can still get it if you're not part of the main ethnic groups that get this disease. Nobody in my family has it but I did a DNA test and I noticed there was a tiny part of my DNA sequence from the area around Turkey on the chromosome that contains the gene usually attributed to Behçet's. No one in my family is Turkish. I am strictly half British and half Filipino. Goes to show you never know what genes you may have. And some people get it without any of the genes related to Behçet's. Unfortunately it's very mysterious, but this is a good supportive commmunity if you ever need help. Take care xo

  • I am a 56 year old white female who was diagnosed with Behcet's last year. I went to my dermatologist while I was having a breakout of severe mouth ulcers.... inside and out. She did a biopsy of one of my lip ulcers and one inside my mouth. Two weeks later.... she diagnosed me with Behcet's. I now take colchicine, and it keeps the ulcers at bay. I continue to have the headaches, severe fatigue, and very painful joints, achy all over. My rheumatologist thinks that I have Fibromyalgia and wants to put me on Cymbalta. I hope this helps! Does anyone have any thoughts on Cymbalta? Thanks!

  • Hi kpie,

    I'm not sure I understand, have you been diagnosed both Behcet AND Fibromyalgia? I have been on colchicine, then on azathioprine and since last year I have switched to Humira.

  • Yes.....I have:

    Sweet's Syndrome

    Osteoarthritis

    Behcet's

    Fibromyalgia.

    My dermatologist diagnosed the Sweet's and The Behcet.

    My rheumatologist diagnosed The osteoarthritis and fibromyalgia.

    My rheumatologist is heading my care / treatment plan, but he also had me see:

    Neurologist,

    , gynecologist,

    gastroenterologist

    Opthomalogist

    My rheumatologist put me in colchicine for the Behcet's and would like for me to try Cymbalta for my Fibromyalgia Symptoms.

  • I see thanks for clarifying this. I have never heard of Cymbalta before. All the best, hope you'll find the right treatment for you.

  • It was actually first used ( I live in the states ) for depression. Recently, they (FDA) approved it for the symptoms of Fibromyalgia. There is a genetic, but it is still rather costly. I started on 30 mg. and after a month went to 60 mg. My GI Tracht is adjusting to it slowly. It has already immensely helped my joint pain..... especially my wrists. However, I am still waiting on the 'energizing feeling' to kick in!

  • Hi Maddie,

    I wouldn't focus too much on the ethnic group and more on the symptoms. There are a lot of non middle eastern people with this disease and as far as I know there isn't yet any study that can prove that a particular gene is related to BD.

    I would rather focus on the symptoms. As mentioned by billi, diagnosis is usually made by a having a series of three symptoms out of five within 6-12 months. Based on what you have described and especially the fact that there is some activity in the eyes, I think you should go to a rheumatologist or find out a Behcet’s Syndrome Center somewhere in your country.

    My advice is to get as much rest as you can, eat healthy and try to find someone you can talk to that understands what you are going through.

    Take care,

    Giacomo

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