I was diagnosed four years ago with Behcet's by my OB-Gyn and a Dermatologist, that diagnosis was confirmed by my first Rheumatologist. I was put on Hydroxychloroquine pills twice a day. Due to insurance changes, I had to change Rheumys. My 2nd Rheumy didn't even question the fact that I had Behcet's, just told me to keep doing what I was doing because it seemed to be working. Then, about six months ago I began having flare's...every month. Rashes on my skin, ulcers all over, you know the drill. After getting fed up that I couldn't get an appointment with my Rheumy, I scheduled an appointment with a new Rheumy - Dr. Tan at the UT Med Center in Houston (he's amazing btw). By the time he saw me I was between flares, but I told him my history and he added Colcrys to my Hydroxycholoroquine. Colcrys is a gout med that is supposed to also help decrease the severity of ulcers (skin and mouth). He also took me off Prednisone and gave me Methylprednisolone because I told him I felt the Prednisone never helped.
Then last month, May, I had my 4th or 5th flare in 6 months. I called Dr. Tan and he got me in immediately (this was the first time he was going to see one of my flares). At the appointment he made it very clear that the rash on my skin was unlike any rash he had seen on other Behcet's patients, and thus he wanted me to go see a Dermatologist he worked with (also in the UT Med Center). Unlike the other Rheumy's who were pushing me to start Imuran any time I would have a flare, Dr. Tan wanted to double check the diagnosis (with the help of the Dermatologist) to make sure that I did in fact have Behcet's. Thank goodness he did, because what I have been living with for almost six years has turned out not to be Behcet's, but Erythema Multiforme.
If you look up the description, it could be pretty easy to get Behcet's and Erythema Multiforme confused. Both disorders have skin lesions, mouth ulcers, genital lesions, eye involvement, and joint involvement listed as common symptoms. The difference is Behcet's is genetic where Erythema Multiforme (EM) is caused by a virus or medicine...the big plus about EM is there is a test for it (cheers!). All they have to do is biopsy a lesion, send it in, and you have an answer within a week (cheers again!). So my test came back positive. This would also explain why I never had any of the eye involvement or joint problems experienced by so many Behcet's patients...I never had Behcet's.
At first I was a little put off by the fact the 2nd Rheumy never did her own diagnosis. I even asked Dr. Tan why it took four years for someone to question whether I actually had this very rare disorder. His insight helped me put things into perspective. As he explained, doctor's operate within a filter, a filter of their own experiences. Behcet's is so rare that most doctor's only have a handful of patients, maybe 5 or 6 tops. When a doctor comes across a patient like me, whose symptoms aren't that severe, they do their best to try and diagnose that person but they only have their own experience to rely on. This makes complete sense why I was misdiagnoses...after all, a Rheumy probably wouldn't see a lot of EM cases...that's a Dermatological condition. I def respect the other doctors, I will be the first to tell you that every doctor I have worked with on this long journey was kind, compassionate, and did their best to help me. That being said, it puts doctors like Dr. Tan into a category above the rest.
This long journey has taught me a lot of things, but the top two things it taught me are:
- when it comes to your health, don't stop at the first diagnosis. If something feels "off" (like the Behcet's diagnosis did for me) go get a 2nd or 3rd opinion, and make sure that doctor is using their own knowledge - not just double checking the first doctors work.
- the doctor is important. Not all doctors are equal. Find the one that you feel goes above and beyond. Also find one that makes them self available to you - especially when it comes to a rare disorder/life threatening disease. Communication and follow-through are key.
Thank you so much for your information. So sorry you have gone thru being misdiagnose! My daughter has been 90% diagnosted with Behcets, but the doctors are not totally sure. at any rate it is an Auto Immune Problem and they have her on, of course, Pednisone started at 60mg down to 11 and soon off while the Imuran builds in strength. she has been on 150mg of Imuran for 3 months now. She has been having problems with her eyesight, it is better now but still not 100% but almost. this is her 4th bought of eyesight problems so we are hopeful that this will take care of it. She never had any other symptoms except she use to get a lot of mouth source, but once she stopped chewing gum that really cleared up. She has been on these meds since February and i am so afraid that that is too long. I hope with our next appointment he will take her off of the Predn. She is only 22 and far to young to have a life time of one illness after the other. I sure hope we have gotten to the end of this and it goes into remission forever!!! I know wishful thinking but I wish you and everyone with these AI Disease the same. someone should find out why there are so many people suffering with this immune disorders. I think it is more why'd spread the cancer but no one is taking about it.
ReplyDeleteI have been following another Blog on Sarcoidosis which is another similar AU disease.
In fact, I thought she might have this and not Behcets because of her swollen lymph nods! Swollen Lymphs is not a sign of Behcets but is a sign of Sarco. She does not have any other symptoms and her lymph have not showed up for at least a year now. Thank God!!
Thank Heaven for these blogs they have really helped me a lot. In understanding the methedos the doctors are using and what to watch out for. so I thank you and wish you well.
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