Do you think I have Behcet's?

[Aly-00]

Hi there!

I'm new here! I would just like your opinions whether you think I have Behcet's?

February - I had around 3 sores 'down there', difficulty sitting/walking, then the next day I had a high fever. Nurses in a walk-in clinic had no idea what it was and I was given antibiotics. The next day my period started. The sores started to look like ulcers. (soo painful when trying to wee!) Around a week later it healed.

March - I had a small red sore down there again, but with no pain and it didn't develop into an ulcer. Went to the doctors again, and again they didn't know what it was, so they told me to go to the Sexual Health Clinic as they though it could be herpes, event though I've never been sexually active. Had a swab for herpes which was negative. That then healed by itself.

The next 2 months, I didn't experience anything.

In April/May I noticed I started getting headaches very often. At the worst time, I would get a headache almost everyday/every other day. Then the next few months I then started getting mouth ulcers.

One time I had one on my tongue and upper lip which was really big! Felt so frustrated that I couldn't eat properly. After the mouth ulcers appeared, I had my period again.

The next month I had around 3 mouth ulcers again. Which then I had a blood test and it shown that my plasma viscosity was high due to inflammation.

I was also referred to a Rheumatologist, and seen him last 8th of October. The consultant said he couldn't diagnose me with Behcet's yet. I had a blood test, around 6 tubes! As well as a urine test. (waiting for results) I'm going back to the hospital in December.

I also feel like my memory has been bad these past few months, could that have anything to do with it? And these headaches still keep on coming..

I'm sorry I'm sure you get a lot of messages like this ^_^

What do you think?

Thank you

[andreafm]

Hi there...welcome to the group I hope you find it useful in helping you to find a diagnosis.

Your story is pretty familiar with lots of people here and many years ago a lot of us were diagnosed with herpes as there wasn't a test for it before. This meant a lot of us went undiagnosed with Behcets for many years.

It is a difficult condition to diagnose as there isn't a test that can prove you have Behcets and the Dr's have to work on your medical history and symptoms for some time before being able to confirm Behcets. I have attached a link to Behcets Syndrome Society website factsheet page to show you the criteria for diagnosis

behcets.org.uk/information-...

I have attached another link factsheet page that shows all the other similar conditions that your Rheumatologist will have to count out, before deciding.

behcets.org.uk/information-...

You can see how many there are and perhaps understand why it can take a long time....and get pretty frustrating at times. But it does sound as if you have been guided to the right place with your Rheumatologist who seems to be looking into it properly.

The best you can do for yourself and your Rheumatologist is take photo's of anything visible and also keep a diary of your symptoms...even if you think a symptom isn't relevant, put this down. Take these along to your appointments when you go.

Hope some of this helps and feel free to ask any questions

******P.S you may not realise but there is a way of making your posts/questions private for this group only and not the whole internet, by selection the "community" button at the bottom of the post/question page****

[Aly-00 in reply to andreafm]

Thanks so much for the info and the fast reply!

I had a blood test the other day and was told to keep an eye on the skin where the injection was done, in case it swells or stays longer than usual, is that right?

Thanks again!

[andreafm]

Glad it was helpful.....yes it is quite common for people with behcets to have a reaction to blood tests.

This is similar to what they call a pathergy test (papule >2 mm diameter, 24-48 hrs or more after needle-prick) which some Doctors do to confirm behcets.

If you look on the diagnosis link I gave you above it will state this as a possible criteria for Behcets.

I get 2 pustules near the site where the needle went in and it looks like you have had more than one blood test. I don't get them every time but do get them often when having blood tests. If you do get a reaction...try to take a photo for your Rheumatologist as this will help.

[Aly-00 in reply to andreafm]

I see. Thanks a lot i didnt really get a reaction which is good. Thanks again, take care