Fever, agony, not yet diagnosed bechets, feeling defeated

[SelinaL]

Hi all, this is my first time on here.

I feel so fed up and down at the moment and almost defeated. I have suspected bechets although I'm sure it is that as I have mouth, throat, genital ulcers (went to a clinic and they swabbed the genital ulcer which came back negative for herpes) I have been relapsing monthly, have the same symptoms of throat, mouth and genital ulcers as well as a high fever that at the moment is on its third day and going strong, previously lasted 7-8days. I have aches pain and shivers, sweats and extreme fatigue. I have been sent for countless blood tests and have just come to my wits end and feel like giving up. It feels like torture and trying to manage a very busy lifestyle and raise a 6 year old single handedly whilst constantly feeling ill is proving mentally and physically impossible.

I was previously admitted to hospital but they sent me home. I was tempted to go back today as I felt so bad with the fever and shakes but I thought what's the point. Any advise on how to deal with this and fever would be greatly appreciated.

Sorry for the rant!

X

[Hidden]

Hi,

My answer is going to very practical. You say you have been sent for lots of blood tests but don't say who has run them or where you stay.

Behcets is a rare, complex disease which can be difficult to diagnose and is a variant of Vasculitis. Because of this the best way to get a diagnosis and effective treatment is to see a Consultant who has experience in diagnosing and treating Behcets. No blood test will confirm Behcets, it's a clinical diagnosis based on symptoms.

If you stay in England you can ask for a referral to one of the Behcets Centres of Excellence as they are nationally funded and don't cost your GP anything for the referral. Your GP, Dentist or a Consultant can all make the referral so don't be fobbed off. Here is the link

behcets.nhs.uk

If you stay elsewhere in the UK then it can be a bit trickier but I do know of Consultants with experience in Bechets in Scotland, Wales and Eire. Unfortunately with a rare disease we need to be very focussed on our needs and getting a referral to the right Dr. There are excellent treatments out there which can make a difference so don't give up.

[SelinaL in reply to Hidden]

Thank you for your reply Keyes. I live in London and my GP has been sending me for various blood tests but very much in his stride. Thank you for your comments I will ask to be referred asap and fingers crossed there will be a light at the end of the tunnel!

[Hidden in reply to SelinaL]

You have a Centre of Excellence on your doorstep in London thankfully.

If your GP refuses then ask them to document your request in your notes, their reason for refusing and get it all in writing as that often makes them change their minds.

Take lots of pictures of your ulcers and any skin rashes/ bruising etc and write out a symptom timeline. If you get migraines, problems with your eyes, abdominal pain or other symptoms then include those as well.

Your GP can phone or e mail the clinic for advice beforehand and remind them that it's a free referral as the centre is nationally funded. Good luck!

PS There is also a Dr Nicola Ambrose in London who has experience in Behcets and may be nearer to you, I will see if I can find a link to her.

[Hidden in reply to Hidden]

uclh.nhs.uk/OurServices/Con...

[sam0511]

You sound exactly like I was...diagnosed in April this year after losing partial sight in one eye through inflammation. There is no test to confirm Behcets, just symptoms. You don't say where you are, but if you are in the UK I would try to get to see a consultant in Birmingham. They are top of the game regarding Behcets. Do this as soon as you can, I am fine now, on medication - Azathioprine, but no more flares. Every month I was in bed for a week, thought it was monthly migraines, fever, ulcers etc. Please let us all know how you are getting on. Good luck