Behcet's Syndrome Society
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Help please

Help please

Hello, im wondering if anyone can help me please

Ive had many health issues and during one investigation the dr mentioned behcets, so I was hoping someone might be able to help as so far all the Drs have been useless!!

 At the time of the investigation it was because I got flare up in the never regions- the Drs were all mystified! This particular dr asked about mouth ulcers and linked the two with behcets but at the time I didn't suffer with them. Now however I am.

My question to you is - does any or all of this sound like behcets to you?

Here is a list of some of my problems 

For many many years I have had joint problems, incredibly painful and stiff knees and hips. 

My upper thighs are very tender - more so than any part of my body and feels pain very easily even with the slightest pressure.

I get headaches all the time and spotty vision.

I have a very bad tummy- the Drs brushed it off as ibs - but I have no trigger! I'm bad every day all day!

My lady parts flare up and get very sore, red raw. Again no obvious reason as to why.

My hair falls out.

I get very tired very easily.

Night sweats and restless legs.

If I get a cut etc I'm slow to heal and ALWAYS get infected 

Recently my mouth has got very sore too, I've been to 2 chemists but neither have a clue (unable to get a Drs appointment!!)

Does this sound like behcets to you?  My Drs have been useless so far, so if it doesn't sound like it there is no point in me fitting an uphill battle with them for no reason! 

I've attached a picture of my mouth.

As much as I do NOT want to be poorly and in pain all the time - I would like to have a name for it. Without a name, I just feel like a pathetic hypochondriac.

Thank you for any help you can give me 

5 Replies

Sounds very like all the symptoms I have and my specialist thinks it is Bechets....

Sorry to hear and good luck

1 like

Thank you for the response 

The more I read the more I thought it was :( 

I guess now it will be time to battle with the gp. 

As I already said, as much as I don't want it- it would be nice to have a name... To constantly complain about this that and the other with no cause is really starting to wear me down and make me feel pathetic 


Hi and sorry for your problems.   It could be Behcets but it could also be other diseases.  The average time for diagnosis was 12 years but it is improving.  I have suffered with BD for over 30 years and back then nobody had any idea what was wrong with me.  Eventually. After BD being mentioned several times in the latter years I got my diagnosis.  Now we have the Behcets society, Centres of Excellence. In London, Liverpool and Birmingham and lots more knowledge of the disease and research.  I know things seem overwhelming and you want answers which you should try to get, but you need to know tHat many autoimmune illnesses have similar symptoms and it is so important that diagnosis is correct so that you can receive the right treatments and medications.  Best place to start is a rheumatologist for most of us this is our main consultant.  Advice......write everything down about your symptoms and how you feel and what other docs have said, also take photos with you of any ulcers or rashes and don't be put off, it may be a leg journey but you can get through it.

I wish you well and hope you get the answers you need.


1 like

I am really sorry you don't seem to be getting the help you need.

It definitely sounds like you have some kind of auto-immune disease, and you really need to see a Rheumatologist.  I don't know what country you live in, so this may be easier said than done, but can't you ask your GP to refer you to a Rheumatologist?

You mentioned 'spotty vision'..... I don't want to scare you, but you need to get that investigated. 

Good luck, and let us know you go.


Hi :)

I'm in the uk.

My medical history has read these things over and over again on a loop for over 10 years now.

I have an appointment in a few weeks with gp so will push for a referral 


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