Discussions By Condition: Medical Stories

Behcet's

Posted In: Medical Stories 10 Replies
  • Posted By: peanut1968
  • February 20, 2008
  • 05:21 PM

In June of 2007, I ended up at the ER for my 5 year wedding anniversary.
The doctor really did not exam me. I had a very sore throat( could not speak or swallow), fever,vomiting,and a migraine. He said I had a virus and sent me home. 5 days later I went back to the ER. In addition to the other systomps I now had ulcers on my genitals. At first they told me I had herpes. I tested negitive Twice before they belived me. I had ulcers and lesions on my throat and gentials. I also had joint pain and extrem fatigue.
Here we are months later and they are 90% sure that it is Behcet's(BD).
Not to many doctors around here know much about it. We are all learning off the internet. I do have a dermotolgist who has treated it before. We are trying different medications to try and control the outbreaks and flares. No luck yet. It would be great to hear from others that are going through this and maybe learn more as we go.

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  • In June of 2007, I ended up at the ER for my 5 year wedding anniversary.Not to many doctors around here know much about it. We are all learning off the internet. I do have a dermotolgist who has treated it before. We are trying different medications to try and control the outbreaks and flares. No luck yet. It would be great to hear from others that are going through this and maybe learn more as we go. Hello Peanut1968: Can you possibly share some information? My doctor stated today that he strongley suspects Behcet's and I have to return to his office on Friday for the pathergy test result. I am so confused. Any good websites or journal articles worth viewing? Thanks!
    bh80999 1 Replies Flag this Response
  • I would have thought it was herpes 1/2 but it sounds like Behcet's looks like herpes but you have to have the other signs, too. So your blood test for herpes was negative? You know, there are many false negative for that test, especially if the blood sample is not correctly handled. Did you make your spouse get a blood test for it, too? Did you get a blood test for syphilis, too? http://en.wikipedia.org/wiki/Beh%C3%A7et's_diseaseInternational Study Group diagnostic guidelinesMust haveoral (aphthous) ulcers (any shape, size or number at least 3 times in any 12 months),along with 2 out of the next 4 "hallmark" symptoms:genital ulcers (including anal ulcers and spots in the genital region and swollen testicles or epididymitis in men),skin lesions (papulo-pustules, folliculitis, erythema nodosum, acne in post-adolescents not on corticosteroids),eye inflammation (iritis, uveitis, retinal vasculitis, cells in the vitreous),pathergy reaction (papule >2 mm dia. 24-48 hrs or more after needle-****k).
    Monsterlove 2921 Replies Flag this Response
  • Hi. I have been recently diagnosed with Henoch-Schoenlein Purpura but there is still reason to suspect that I may actually have Behcet's Disease which is rare but can be found in people from the Appalachian Mtns who are descendents of the Melungeon people. You might want to check into that. Some good treatments for this condition include Prednisone and Methotrexate which are controlling my symptoms and have prevented the return of the Ulcers. A treatment for gout is also the same including other drugs I have not and hope not to have to take. Good luck. Keep searching and try to contact the Melungeon website which might at least give you moral support.
    Anonymous 4 Replies
    • October 4, 2008
    • 09:34 PM
    • 0
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  • In June of 2007, I ended up at the ER for my 5 year wedding anniversary.The doctor really did not exam me. I had a very sore throat( could not speak or swallow), fever,vomiting,and a migraine. He said I had a virus and sent me home. 5 days later I went back to the ER. In addition to the other systomps I now had ulcers on my genitals. At first they told me I had herpes. I tested negitive Twice before they belived me. I had ulcers and lesions on my throat and gentials. I also had joint pain and extrem fatigue. Here we are months later and they are 90% sure that it is Behcet's(BD). Not to many doctors around here know much about it. We are all learning off the internet. I do have a dermotolgist who has treated it before. We are trying different medications to try and control the outbreaks and flares. No luck yet. It would be great to hear from others that are going through this and maybe learn more as we go.I understand what you are facing. Despite tests for every possible disease new doctors invariably diagnose herpes, treat one like an idiot when you explain what the problem is, and are hugely puzzled when a negative for herpes arrives...Get copies of all your tests and have then to hand to medical people. Keep a diary of symptoms. I just read that Vitamin D and Vitamin E may be helpful so I'm going to try this. Insofar as the pin ****k test is concerned it is no longer considered a diagnosis as it appears to be positive prevalent in Japan and possibly Turkey and a few other countries. it is no longer considered a marker. For really good information go to the Israel site on Behcets or try this as there are plenty of contact links. http://www.behcet.org.il/bdconventionE.htm. Treatment: one name - 'Prednisone' immediately a flare begins. Off it as soon as poss.
    Anonymous 42789 Replies
    • November 14, 2008
    • 03:48 AM
    • 0
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  • I had the same symptoms, ulcers in both my genitals and in my mouth. I was told it was herpes, but had not been sexually active, so I knew it wasn't. The test came back negative of course. About 11 years later it came back, and i had been sexually active at this time. So then the doctors said it was herpes. I explained I had this prior, but they didnt believe me. When two more tests came back negative the doctor actually called me personally to aplogize. I heard about Behcet's, but also learned of Neumann Bipolar Aphtosis, which I think may be the issue. You may want to look up this condition for your research. I almost always get them during my menstrual cycle when I get them, and always with concurrent mouth ulcers (canker sores). I have tries using hydrogen peroxide and a styptic pen, which burns badly, but seems to dry them up in a few days.
    Anonymous 42789 Replies
    • February 4, 2009
    • 05:03 PM
    • 0
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  • I am "lucky" in that my genital outbreaks only occurs once about every 8 years (so far I have had 3 outbreaks total.) The canker sores and acne are pretty much always a struggle, especially just before my menstrual cycle, but they are manageable without hefty medications. For this most recent genital outbreak, my doctor prescribed an topical corticosteroid cream: Triamcinolone Acetonide cream 0.1%. It seems to be helping with the inflammation and it significantly dulls the pain and itching. Have to warn you: it stings and hurts like ***l when you have to touch the sores to to apply it. But, within just a couple minutes, the relief is really worth it and it lasts for about 12 hours.
    Anonymous 42789 Replies
    • November 1, 2009
    • 07:20 AM
    • 0
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  • Have you talked with your gynecologist about the possibility of taking active birth control pills 365 days a year? This can reduce your symptoms that correlate with your monthly cycle.Also, try using corticosteroid cream and/or lidocaine on your skin ulcers.Best wishes, and don't worry... you DON'T have herpes and you did nothing wrong to get this disease.www.behcetsdisease.comandwww.behcets.com
    Anonymous 42789 Replies
    • November 29, 2009
    • 02:23 AM
    • 0
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  • I was diagnosed with Behcet's at the age of 19. I had been having outbreaks since I was 16 years old but my doctors would just have me tested for herpes which would come back negative and question if I was raped, I would feel offended. For so long I knew something wasn't right with my body and everyone just accused me of being a hyprocondriac. I went into the hospital with genital ulcers, ulcers in the mouth, skin bruising, a fever of a 105.5, joint pain, fatigue, and a bad headache. The ER doctor thought it was herpes until my bloodwork was ran and they found my OBGYN doctor that was on call at the time. My doctor then admitted me because of my highly elevated white blood counts and low potassium then she went home researched and came up with Behcets and called in specialist. I was in the hospital for 2 weeks. I had every sign of Behcets. The left eye pain, the mouth ulcers, the genital ulcers, the pathology test (my *****s turned into lessions and took weeks to heal). I left the hospital on 23 different medications, I am now currently on 4.
    Anonymous 42789 Replies
    • January 3, 2010
    • 05:29 PM
    • 0
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  • Hi all,I was diagnosed when was 21. I have learned a lot since then. There are a lot of good sites but the 2 I recommend are the National Arthritis Foundation ( type Behcets in the search bar) this was recommended to my the PA that diagnosed me. She was awsome! She had just come from a convention in which she learned about it. And the other site is the American Behcets Disease Association ( ABDA). You can sign up for the free web member or join for the Premier for 35 a year. And you can get information for your doctors if they are unfamiliar from these site. The (ABDA) is also on Facebook. Good Luck and hope this helps. :)
    Anonymous 42789 Replies
    • January 11, 2010
    • 05:31 PM
    • 0
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  • Hi! I´m brazilian and my brother has Behçet. He´s without symptoms since 2008. I have many questions about this disease, I think I´m begging with some symtoms too and no one believes me, everybody thinks I´m hipocondriac. I beggining with genital ulcers, mouth ulcers, bad headache and skin bruising. I would like to know if Behçet´s disease can increase a little some linfonodes? Help! I need this answer to live! Sorry my bad english. If, have answer , you can send to thianne_brito@hotmail.com Thanks so much!
    Anonymous 42789 Replies Flag this Response
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