Hi there! I've spent hours in the last 4 days reading up on many different syndroms, diseases and viruses. But it keeps coming back to Behcet's.
This last week overnight I woke up with many ulcers in my mouth and on my labia. They're now also on my scalp. I was having bloating issues in my tummy and a fever so I went to the doctor, not wanting to self diagnose. She immediately thought it may be herpes but then saw them and didn't seem too sure. Of course they're testing for it, and I'll find out tomorrow, but I've never had any signs of herpes before and I've been with the same man for 3 years.
I guess my question is, do my symptoms sound like it could be Behcet's, and how did you bring it up to your doctor? I want them to take me seriously.
Age: 26
Gender: Female
Symptoms: 3 days now
• Genital ulcers, and sores. Not clumped together
• Mouth ulcers and sores on tongue
• Sores on scalp
• Swollen and tender gums
• Swollen lymph nodes in armpits (both sides)
• low grade fever (broke after 24 hours)
• Indegestion (gone after medicine)
• Constipation (almost gone after medicine)
Sorry, if this is obnoxious, I just want to make sure if this sounds plausible that I try to get a diagnosis sooner than later. It just feels all so sudden.
Thank you!
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Tai_me_in_happy
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Hi yes it's hard when nobody seems to be listening to you. It could be Behcets but also could be several other autoimmune diseases. It's very important that you get the right diagnosis and so the correct treatments and meds. These things take time to get it right. Wait for the test results and then if they are negative please post again or private message me.
Unfortunatly It can take a while to get this condition confirmed - I was told I had Herpes for over 20 years before I was officially diagnosed with Behcets
It does sound like Behcets. I had similar symptoms my self for many years. Firstly stop taking any anti-inflammatory medicines. That was a trigger for my genital ulcers. Ask to be referred to an ophthalmologist and rheumatologist. I questioned the rheumatologist bit but they are actually key to getting a diagnosis. Do your ulcers etc coincide with your monthly cycle? Mine did. Good luck and let us know how you get on. I was only confirmed Behcets a year ago, after 20 years of symptoms. It would be great if you could find out early. Behcets is very treatable, if caught early, so don't frighten yourself on the internet - we have all been there!
You are around the same age as I was nearly 30 years ago when I started noticing changes that could not be accounted for which flared up on and off for years, in the early years the affects on my joints and muscles were not as noticeable as today, at one time I was under a consultant for 7 years who said he felt everything was caused through nerve pain in my joints and the ulcers were caused through stress, over the tens of years I have had appointments with so many specialists with no explanation about the ulcers from any consultant, I had seen a rheumatologist only 12 months ago who again discounted the ulcers as having nothing to do with the condition JHS and Costochondritis I had been just diagnosed with so here I was again with no explanation nearing 30 years after I recorded my earliest symptoms. Like you it was only through my own research did I find out about Behcets and as much as I did not want to have BD everything stacked up for me including some of the aspects of the conditions I had been diagnosed with only 12 months earlier, now armed with the information gained from the correct websites I went to the GP who at first discounted BD because I do not have eye issues, not that they have been checked, being forearmed and genned up gave me a massive advantage with the GP and instead of me sitting there I felt as though with the notes I had taken with me on BD that I educated the GP on the condition and why eyes did not always play a part in BD, I was referred to the rheumatologist and 5 months later with the dread I was going to see the same consultant as the year before I presented myself and for the very first time I was listened to about not only my other issues but more importantly my ulcers, I had been charting my health, the ulcers, the numbers, frequency, size where exactly they were, taking photographs and it was then through this and the consultations I have had over the last 3 years with neurologist, urologist, gynecologist, orthopaedics, oral and maxillofacial, breast, dental hospital and rheumatologist, I was finally give the diagnosis of BD and Ehlers Danlos and have now eventually started treatment for the right condition. My advise would be to mention Behcets to your GP, they may see this as a one off episode right now so I would say that you really need to monitor what is happening to you and the frequency and write everything down and take photographs. Good luck with getting help and the right diagnosis. Gillian
Where are you? US or UK? You also sound like me. There is no test for Behcets- it gets diagnosed off how many symptoms are present and testing negative for everything else. Theres alot of us who tested negatively for herpes many many times and yet the Dr's wanted to call it just that. (i too am in 13 year monogomous relationship)
I was 25 when my body went crazy. I literally felt unwell on a wednesday out of no where- and BOOM by friday evening- mouth and genital ulcers, pain everywhere. One thing my bf said to me at the time with regards to the vagina ulcers i had (there was 7 and they were all over, inner labia, size of a pencil eraser end) was that they (the vag ulcers) looked like what was in my mouth. So that could be helpful.
My gyno cut one out on the spot and biopsied it- came back just inflammation- no viral or bacterial activity- if that also helps.
Lastly, as for bringing it up- I literally printed the symtom thing from ABDA.com and brought it in on one of my many appts- and asked could be be behcets- i got shot down by some, and others were intrigued. I also had brought my negative BW (stds... lupus... etc) and had that.
Finally- when i saw my rhuematologist- she diagnosed me off my verbal description of symptoms as they had gone by that time and all my negative BW.
I'm in the United States. I should get my test results back in about an hour. Thank you for your thought out response, it's nice to know that someone else has had this happen, this weekend has been horried, full of stress and anxiety, I went to bed last night scared I wasn't going to wake up.
I don't know what I'm hoping for at this appointment, but I want to be an advocate for my health, and get the ball rolling for answers.
im also USA- Baltimore md here. Honestly, this is a scary time- but i promise it gets easier and easier. Its one day at a time. Im now officially dignosed for almost 4 years now and i dont even flinch at ulcers anymore. You become so strong.
Be your best advocate and seek a second opinion if you feel mulled over or ignored. I did. Dont be afraid to ask for drugs or anything. Keep a list of medicines, dates of symptoms and when they started. ALso for future things, start keeping a mind on life stressors. This is key. Youll see that youll feel better and less tired once you cut out stressors. feel free to PM me or follow my other responses on here.
Not herpes, which is good. My doctor had not only heard of Behcet's, it had crossed her mind. She still isn't convinced that's what it is. She thinks it's a viral infection. But she's more than willing to explore Behcet's as a diagnosis. I feel so much better. I'm hoping it is just a viral disease, but she ordered blood work to check on my liver and kidney functions as well as my platelet levels and other blood levels.
Update 2: So I just got a call with my throat culture. Apparently I have strep throat. I'm honestly surprised, I've had strek throat many times before...this didn't feel anything like that. But...antibiotics it is.
All these symptoms unfortunately happens for herpes, or behchets. I had a biopsy done. For years I was on meds for herpes! Was not helping to get painful ulcers to go away fast, & stay away! Diagnosed after biopsy having behchets.
It turned out to be a Strep infection on my body. My herpes tests both came back negative. I was put on antibiotics and I felt like a new person after 48 hours.
My doctor has worked with someone who has been diagnosed with Behcet's, and didn't think that's what it was. But I will forever keep an eye out for more symptoms. I didn't know it existed, and I am grateful that I learned about it.
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