Yes, you read that title right. I just got word from my Rheumatologist and Dermatologist that I was misdiagnosed! (This is a good thing) Let me backtrack for a minute...
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.
Showing posts with label Behcet's symptoms. Show all posts
Showing posts with label Behcet's symptoms. Show all posts
Wednesday, June 6, 2012
Friday, March 30, 2012
Hello Bright Eyes!
Hello friends!
Things have been on the up and up. Since starting the anti-inflammatory diet I have noticed a huge difference in my energy levels, my ability to focus on tasks, and my mood. It's been great! Even if my 'diet' isn't helping the inflammation Behcet's causes, I will remain a fan just because of the positives I have experienced thus far.
Unfortunately I cheated yesterday by going to Whataburger. If you are not from Texas you won't understand, but Whataburger has THE BEST hamburgers...it's because of the perfect combination of the fresh toppings and the mustard. It's so good. I felt I deserved one cheat day after spending a LONG day at the eye doctor. I'll get into that later. Anyway, I'm human and we only live once, so I don't regret enjoying my Whataburger Jr (with jalapenos and no cheese or tomatoes - I kinda stayed true to the diet).
Things have been on the up and up. Since starting the anti-inflammatory diet I have noticed a huge difference in my energy levels, my ability to focus on tasks, and my mood. It's been great! Even if my 'diet' isn't helping the inflammation Behcet's causes, I will remain a fan just because of the positives I have experienced thus far.
Unfortunately I cheated yesterday by going to Whataburger. If you are not from Texas you won't understand, but Whataburger has THE BEST hamburgers...it's because of the perfect combination of the fresh toppings and the mustard. It's so good. I felt I deserved one cheat day after spending a LONG day at the eye doctor. I'll get into that later. Anyway, I'm human and we only live once, so I don't regret enjoying my Whataburger Jr (with jalapenos and no cheese or tomatoes - I kinda stayed true to the diet).
Thursday, March 15, 2012
It's a Roller Coaster of Emotions...
Just to update you, for those of you who are just jumping on-board, I had my first flare in three years back in January of this year. It was a fairly minor flare and consisted of a couple dozen ulcers on the inside of my lips. It still was very painful, of course I was tired, and my mouth looked awful, but it was nothing compared to what it was three years ago when my immune system was out of control. THEN in February I battled some upper respiratory infection basically all month. Granted, I was much better off than some people in the office - we had people with Pneumonia, Bronchitis...it was crazy in our office!
THEN in March I had my second flare. This time my mouth wasn't affected, but my skin was and this was the worst case of skin lesions I had ever had. I looked like I was covered in large chicken pox. They itched and were painful just like chicken pox too!
Now it's mid-March, and I finally physically feel like I am progressing to some sort of normal state. My upper respiratory infection is gone, I'm not fatigued, and I haven't had any more sores pop up on my body in the last week. But emotionally, I'm a roller coaster of emotions. I've never been sick for such a long period and I'm a little depressed because of it.
THEN in March I had my second flare. This time my mouth wasn't affected, but my skin was and this was the worst case of skin lesions I had ever had. I looked like I was covered in large chicken pox. They itched and were painful just like chicken pox too!
Now it's mid-March, and I finally physically feel like I am progressing to some sort of normal state. My upper respiratory infection is gone, I'm not fatigued, and I haven't had any more sores pop up on my body in the last week. But emotionally, I'm a roller coaster of emotions. I've never been sick for such a long period and I'm a little depressed because of it.
Monday, March 12, 2012
That was a Long Hiatus!
So good news, bad news, then more good news...
Good News: For the past three years I have been (pretty much) flare free!! I've had a couple minor "was that a flare or wasn't it?" moments, but overall the Hydroxychloroquine my rheumy gave me seemed to help manage my symptoms.
Bad News: In January of this year I had my first official flare in 3 years, this one consisted of mouth lesions and skin lesions on my arms. THEN in March I had another, and although this one did not affect my mouth my body was pretty much covered in ugly spots.
Good News: This reminded me that I had once started a blog, with the best intentions to provide the world information about the unpredictable symptoms of Behcet's, new research about Behcet's, and first hand experience from a typical female living with this disorder/disease.
So, I'm back! :)
So why, after being under control for three years did I have two flares in a row? I have a couple ideas:
Good News: For the past three years I have been (pretty much) flare free!! I've had a couple minor "was that a flare or wasn't it?" moments, but overall the Hydroxychloroquine my rheumy gave me seemed to help manage my symptoms.
Bad News: In January of this year I had my first official flare in 3 years, this one consisted of mouth lesions and skin lesions on my arms. THEN in March I had another, and although this one did not affect my mouth my body was pretty much covered in ugly spots.
Good News: This reminded me that I had once started a blog, with the best intentions to provide the world information about the unpredictable symptoms of Behcet's, new research about Behcet's, and first hand experience from a typical female living with this disorder/disease.
So, I'm back! :)
So why, after being under control for three years did I have two flares in a row? I have a couple ideas:
Monday, July 6, 2009
Informative Information
Have you ever watched 'Mystery Diagnosis' and thought, "Hey! I could be on there!"
My boyfriend and I joked many times about nominating me for the show. Just for the record, my boyfriend won't admit it, but I do believe he may have even written a letter to the producers asking them to allow me on the show! ;)
Well, a Behcet's episode has already been done. (Too bad it wasn't shown while I was at home on the couch wondering what was wrong with me! HaHa). Joanne Zeis, a women who experienced Behcet's symptoms 17 years without being diagnosed, was the women on the Behcet's episode of 'Mystery Diagnosis'. From her website, http://www.behcetsdisease.com/basics.htm (this is actually her older website, but it still has very good information on it) there is a link to the 'Mystery Diagnosis' website. Or, I can just copy and paste the link here! Here it is: http://www.muzility.com/videoviewer.php?mech_id=8d34201a5b85900908db6cae92723617
(But seriously, go to her site, has some good info on it.)
Her newest site is http://behcets.blogspot.com/.
Johanne Zeis is not just 'some women' doing research in her spare time, she is creditable, has achieved recognition from various institutes, and has dedicated her life to informing people on Behcet's. Most importantly, she is just a normal person, like me and you, who is going above and beyond to try and raise awareness for this disease. Definitely a great source.
My boyfriend and I joked many times about nominating me for the show. Just for the record, my boyfriend won't admit it, but I do believe he may have even written a letter to the producers asking them to allow me on the show! ;)
Well, a Behcet's episode has already been done. (Too bad it wasn't shown while I was at home on the couch wondering what was wrong with me! HaHa). Joanne Zeis, a women who experienced Behcet's symptoms 17 years without being diagnosed, was the women on the Behcet's episode of 'Mystery Diagnosis'. From her website, http://www.behcetsdisease.com/basics.htm (this is actually her older website, but it still has very good information on it) there is a link to the 'Mystery Diagnosis' website. Or, I can just copy and paste the link here! Here it is: http://www.muzility.com/videoviewer.php?mech_id=8d34201a5b85900908db6cae92723617
(But seriously, go to her site, has some good info on it.)
Her newest site is http://behcets.blogspot.com/.
Johanne Zeis is not just 'some women' doing research in her spare time, she is creditable, has achieved recognition from various institutes, and has dedicated her life to informing people on Behcet's. Most importantly, she is just a normal person, like me and you, who is going above and beyond to try and raise awareness for this disease. Definitely a great source.
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