New here

[SimplyTheRed]

Hi everyone! I'm new to this but wanted to speak to others about symptoms I have which all match Behcets Syndrome. My rheumatologist has never mentioned it to me and I'm annoyed they haven't listened to me. How do you get a clear diagnosis from rheumatologist so that just don't listen.

[Solbs]

I would consult also with a good orthopedic. Will take blood sample. X-Ray & MRI but the blood is most important

Good luck

[Hidden in reply to Solbs]

Orthopaedic surgeons don't see patients with Behcets usually. Many of us have no raised inflamatory markers etc and have " normal " bloods. X Ray's and MRI's aren't diagnostic of Behcets either. It's a clinical diagnosis which needs to be made by an experienced Consultant as it's very rare.

[Solbs in reply to Hidden]

I am in Japan, in my case the orthopedic made a thorough blood analysis and came to the conclusion that there was an abnormal level of inflammation, which has also affected my liver ( slight) damage. He want to give me stroid injection but I refused on the ground that I always reacted very badly to stroids. He gave cooling tapes and told me that he will give some medication after my liver recovered.

He suggest that I am losing blood from my stomach which is also may be the cause of the of joint inflammation and he suggest that should go to see gastrologist. I did and they made a through examination and found a clon cancer. Luckily it did not spread all over the colon. They have removed it a week ago. My joints are feeling slightly better. Of course, I have to go back to the orthopedic to continue with my treatment and thank him for saving my life. At least for now.

Good luck

[Hidden]

Hi ,

I depends whereabouts you stay, if you are in England you are entitled to a referral to one of the Behcets Centres of Excellence ( in Liverpool, London and Birmingham ). They are nationally funded and won't cost your GP anything for the referral. If you are in the rest of the U.K. it's a bit more complex although there are a few Rheumy's that understand it in Scotland, Wales and Ireland.

In my experience if a Consultant has made up their mind then there is very little that will change that and you need to find someone who will listen!

[Hidden in reply to Hidden]

The link to the Centres of Excellence

behcets.nhs.uk

[2106]

Hi. It is very difficult getting a diagnosis as we all have such different symptoms. Also I have had it for over 40 years and when they took a blood test is wasn't conclusive. It is a very rare disease with not a lot of people knowing or understanding it. Symptoms can change in days or even hours so when you visit a doctor or specialist the reason why you went in the first place with a particular set of symptoms they would have gone and so there is nothing to see. Keep a record of what you eat and drink, how you feel then you can present this to who ever you see. It really will help as we forget little things which could be important. Stand your ground don't let anybody dismiss you. I have a very good Doctor now who really listens. It can be a very long journey but you do reach the end, sometimes it takes just a bit longer. All the best

[distanttree]

In Wales there are no referrals to centres in England and no medics onwill admit to betcets.

I've found that being very careful with foods is best.

For myself no gluten dairy soya a bit of decafinatted tea coffee.

No tomatoes peas

I've found that occasionally I can sneak a bit of reaction food in the middle of a meal and get away with it.

It's a bit of an adventure.

The good bit, I've found some amazing new delicious foods.

Tomatoes and dairy give me eye pain.

Coffee head aches.

Tea make my mouth shed.

After mouthshed I may get dizzy and may find it hard to think

Wheat lumps in my mouth and pain later.

Potatoe and bananas in the same meal causes me bad gut pain.

Separately they are fine.

Also xnthar gum makes my mouth shed...

So I mix my own flour and use phillum powder..the bread is nice toasted

I've been studying reactions in myself and managing.

I'm addicted to reading ingredients.

Every day without a major reaction in body is a relief.

Best of luck.