Behcet's Syndrome Society


Hi there

I was given a diagnosis of fibromyalgia before I was diagnosed with Behcet's. I was seen by a dental specialist who thought that a painful mouth ulcer was in fact a burn to my mouth caused by hot food! Eventually I contacted a specialist at Ninewells Hospital Dundee who was recommended by the Bechcet's Syndrome Society and I have had excellent care since then. However, I still have problems at the doctor's surgery as the awareness of the disease is so limited. When I get a flare up it sometimes starts in my throat as a really horrible streptococcus infection where the back of my throat becomes white and inflamed and I feel really ill with it. I usually get some antibiotics and that can clear it up fairly quickly. However, I went to my surgery today and saw a nurse as a doctor was not available. Despite, trying to explain what it was, she insisted that it was a viral infection. When I tried to explain that this was a manifestation of Behcet's disease she said that I should not be trying to tell a health professional her job. My answer was that was not what I was trying to do but that I wanted to raise awareness of a very rare disease and that it might be useful for other patients. Needless to say it went in one ear and out the other and I left feeling very angry.

4 Replies

Hi there,

Many thanks for this. I was just wondering - how long were you misdiagnosed with Fibromyalgia for?

I'm guessing that it must have been for a number of years....

Once again, many thanks for getting in touch.





Just had to write I too was diagnosed with Fibromyalgia and Chronic Fatigue in 2004 eventually diagnosed behcets in 2010 after having two blood clots. I too have difficultly over here in Jersey very limited knowledge although I have a great GP. They should have a Behcets day to raise awareness.

Take care,



I suggest you leave some BD information leaflets at your GP surgery and give your GP the relevant leaflets personally next time you see him/her. Take an info card with you when you are out and about, as you never know when you might need treatment or where you will be at the time.

If you don't feel you are being listened to you could ask the person seeing you to contact your specialist or a member of his/her team for advice.

I'm not doubting you at all, you know your own body, but generally it is important for all BD-ers to bear in mind that not every symptom is caused by BD as this can sometimes happen and it could be that something even more serious is missed.

Love the name fortunate - it's nice to see something positive! :)

Oh, and I have posted elsewhere, but in case it's not read by those reading this thread, I've posted some suggestions about ways awareness and funds can be raised here:



I'm so sorry to hear that you have had to deal with the ignorance of many health care professionals, especially when it comes to very rare diseases like Behcet's. You definitely are not the only one-- most Behcet`s patients experience this on several occasions, especially pre-diagnosis days or early on with the diagnosis.

I went through so much rotten stuff because of doctors who act so stuck-up and sitting high on their throne-- I basically spent 8 years being very ill and having more and more non-specific autoimmune symptoms appearing every week, and having to deal with so many different doctors who had their own ignorant and often very stupid answers for what was causing my symptoms. The skin lesions and ulcers were diagnosed as simple acne by a dermatologist at the hospital; so because this was stated in my chart, any other doctor I saw after that believed I just had acne, and they would each give their own opinions on what to do about it-- including scrubbing my skin very hard daily and rubbing on strong exfoliating cream-- all of which would`ve just aggravated a worse attack to my skin. Even when my skin would swell and crack, then bleed right in front of their eyes, with no trauma to the area, they would just deny what they saw-- ``oh well you must`ve been picking at your skin when I turned my head.``

At 16, I had a vasculitic attack to my right lung, and for a whole year the doctors were saying it was just pneumonia and kept giving me antibiotic after antibiotic. It took them a whole year of being very ill and compromised with my breathing that they finally decided to do an exploratory surgery via bronchoscopy to take tissue samples and irrigate the blood vessels and air ways. They told us the only reason they were doing it was to flush out the pneumonia which was probably sitting in a pocket in my lung. The findings supposedly ended up showing nothing abnormal; but fast forward another 7 years, and my rheumatologist (who diagnosed the Behcet`s Disease) got hold of the results which actually showed abnormal clusters of immune complexes in the tissues; therefore proving that I had an immune attack to the blood vessels in my lungs.

These were just two incidents I experienced, but there were so many more. Most doctors along the way just didn`t want to bother giving me any of their quality time, and would argue with my parents and I till we were all blue in face about how according to their expertise, I was a ``perfectly healthy teenager or young adult``--- It`s really sad when you think about it because that just shows how little expertise or knowledge many of these professional specialists really possess; these doctors all knew that I was really sick and suffering-- there just was no way that they could not see it or hear the pain in my voice and in my parent`s voices-- but of course because they would test me for those common things that they could easily conjure up, and they would all come back fine, or they would just review prior blood work and tests and go by other`s findings-- so they would say I was fine in the end because they did not know where to go from there.

always just assumed that doctors, especially specialists, knew a little bit about most diseases, even the rare ones. I figured that doctors always test for the more common ailments first, starting with simple things like blood cell counts and liver enzymes and so on, then go from there. But then as I was getting sicker, and the more research we did, I learned just how complex our bodies are, especially when something goes wrong with it. I learned that doctors can only ``find`` what they are looking for; so if no doctor ever thinks about Behcet``s, then you will never be diagnosed with it. This is exactly what happened with me. I went 8 years being tossed around from one doctor to the next-- I had probably been seen by every specialist in the hospital-- and not one of them in the entire 8 years had ever mentioned the name Behcet`s to us. If I had heard of this earlier, I would have read up on it and realized just how much it described my mysterious illness, and I would have fought to have a doctor look into it further for me. I don`t think that most doctors aren`t as intelligent as they claim to be-- I don`t think of most of them as being really dumb-- but I do think that many of them are lazy and arrogant.

If they don`t know what could be wrong with you, especially in a short amount of time, then how dare they admit that. I would have appreciated a doctor who told me they did not know what was wrong and admit that they could not help me; I would have been fine with that-- but instead, most of them just would try convincing me that I was healthy, just because they couldn`t be the one to diagnose me.

Luckily, not every doctor is like this. I eventually found a doctor who was worth waiting months to get into see, and not just completely because he was able to finally diagnose me with Behcet`s, but because right from the second I met him, he told us that he was going to give me his time and care, and that even if it takes some time and great difficulty, he was going to do his best to help figure out what was going on and try his best to help me because he said ``you have been sick for way too long and you are way too young to be suffering any longer``-- even though I am still quite ill even two and a half years after my diagnosis, that same doctor is still by my side fighting with me to try to get things settled down.

I never thought this would ever happen for me. I always just assumed that I was going to be sick the rest of my life, and eventually it would either disable me completely or even worse. I was so scared of what was wrong with me and what the outcome would be; I actually gave up on dreaming about my future because I started assuming that I wouldn`t have much of one. I felt betrayed and hopeless, but even worse was the feeling that no doctor cared that I was suffering.

I have realized that its not that they don`t care or they do it personally against you; the way they treated me was most likely and very sadly, common practice for them. If only these doctors could read our stories on these support blogs and learn from their mistakes because I would never want someone else to have to go through what I did-- but again, sadly, I know I am not the only one.

I know how it feels to have doctors or even nurses doubt you or tell you that you don`t know anything. I always try my best now to help be an advocate about Behcet`s and try to educate any health professional, even the people who take my blood, about my disease and how it affects me personally. I still see doctors to this day who tell me that I don`t know anything about my own disease, and that my ailments could not possibly be caused by Behcet`s. Again, this is either because they don`t actually know about it and won`t admit it, or know very little about it and don`t want to admit it. One thing I have learned is that doctors and even some nurses, hate it when you as the patient are more knowledgeable about something than they are. I appreciate those who actually admit they don`t know about it or that they know very little, and are willing to want to learn more from me. After all, we as the patients know best about Behcet`s Disease-- we know our bodies and how this disease affects us, so we are often very aware of what symptoms and ailments are Behcet`s-related. I understand your anger because I hate it when a doctor or nurse tries telling me how Behcet;s is supposed to affect me. No disease affects every person in the exact same way, and doctors and nurses are definitely intelligent enough to understand this common fact; it just comes down to whether or not they choose to understand.

Anyways, sorry my rant ended up being so long! I just start to get worked up when I hear of others fighting with their doctors over their illness because of my own experiences.

All I can say is to just keep strong, and don't give up on trying to make the doctors understand. Even though they will never truly understand, you have every right to stand up for yourself and to be an advocate about this rare disease.

Take care and I really hope the doctors will begin to listen to you :)



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