Behcet's diagnosis

Behcet's Syndrome
#1

I live in a very isolated area of the United States. Doctors are few and far between up here in the northern reaches where I live.

I am really just here with questions as I know nothing about this, but have been told by a doctor and my primary care provider - a nurse - that this is what I have.

My story: for years I always thought that I had herpes. HSV-2. When I say years, I mean about 30. However, I recently had a test for both varieties of herpes, and they came back negative. I still am unsure about it even with the negative blood test!

Last month, for what I think is the first time in my life, I had canker sores in my mouth. They lasted off and on for about three weeks.

I also tend to get sores around my nostrils, rather like small pimples that are very painful, and this has been for about two or three years.

Another delight is that I have a red round mark on my cheek, about the size of a dime. It periodically flares up and feels like a burn. Then - like right now - it just is a red mark.

However, the herpes like sores have appeared again. It is hard to write about where, but between my buttocks should cover it. Also, pain in my groin from swollen glands, and generally feeling ill. All the symtoms of herpes! So painful, and nothing seems to help. This happens on a regular basis, say once every six weeks to two months. The sores are not always in the same place. This is the place of choice this time.

Anyway, this is my first mail, and it has taken it out of me as this is not something that I have ever spoken about.

I will save the rest for another day.

Aldabra

#2

I was in fear of the same but as it turns out it was not herpes. I suffer
and have suffered with the same symptoms as you. some of my sores where
actually yeast infections, yeah it sounds odd but they gave me meds and it
slowly cleared up. My Doc also told me to use athlete foot spray on the
infected areas. It burns like hell but it also aided in the clearing of the
soars obviously you don’t spray it in mucus membrane but those areas that
you can helps greatly. Talk to your Doc before trying this though! While
they suggested behcets they are not really sure as to what type of auto
immune disorder I have so the quest goes on. As far as blood tests, I
recently had Lyme’s disease and while cleared up with meds my titer test
showed nothing to suspect I had Lyme’s but had all the classic signs! The
Doc told me that would be the case with auto-immune disorders as titers are
used to show the antibodies your body make for specific diseases. All I can
say is hang in there, and treat the symptoms as best you can. Peroxide works
great as a mouth wash for internal mouth sores. Hot showers and heating
pads aid with the swollen lymph nodes. Do what makes you comfortable! I
hope this helps! Good luck! I will tell you I am in remission and have been
for 2 months as I have done in the past. Take the days you do feel good and
do something for yourself. Keeping positive will help your overall health!

On Tue, Oct 14, 2008 at 1:54 PM, Aldabra <
behcets-cpt10693@lists.careplace.com> wrote:

#3

Hi, I really feel for you. I too had symptoms which appeared like herpes for two years and had more than 8 separate tests done which were all negative including a blood test. I was in severe pain most of the time and the doctors did not know what was causing the symptoms. This did subside eventually and the last few years I have not suffered so much with the genital ulcers however since developing eye problems this year I finally had a diagnosis of behcet’s disease. The doctors tend to need to see more symptoms for a clear diagnosis.

To help with your symptoms a salt bath is good, and I used lignocaine to numb the area and also dermovate if you can get it is great as is a topical steroid gel and I found it cleared the ulcers in days (even though more did come!). Try and get enough rest as well as stress makes the symptoms worse I think. For your mouth ulcers corsydol mouth wash works very well… Christina x