Confused

[DR_JAB]

I saw a rheumatologist at the London CofE yesterday and now I'm so confused. He doesn't think my heart problems, bowel problems joint pains, fatigue, ulcers and rashes are actually Behcets at all. I can't believe all these things are not connected. He didn't know what was wrong with me but said I was very disabled. I can't imagine the other rheumatologist I have seen are wrong.

[lovenothate]

Hi DR_JAB ,

Did he explain what that opinion was based on? The symptoms sound very familiar to my Behçets to me.

It might be worth asking for a second opinion or making a further appointment at the CofE when you know that a different Rheumatologist is on duty. I had a bad experience at a different CofE when a stand-in Rheumatologist was on duty because the normal one was on holiday.

Good luck with it and good wishes,

Will 🙂

[VickiOliver]

I think I know who you have seen and I have found the rheumatologist there very abrupt and confusing in appointments. He is good but he’s not always clear. Maybe ask to see Professor Fortune? I saw both of them this time in clinic and they disagreed hugely on some things so there’s always different opinions. But they are the experts who are best to diagnose you. It could very easily be something else. I know getting a diagnosis is very important but it would be better to get the right one ❤️

[Blearyeyed]

Was this your first appointment?

I thought usually , even if they suspected other causes for your symptoms apart from Behcets they still did a full blood test profile and asked to see you again.

If that hasn't happened I think others are right and you should ask for at least another appointment with a different Rheumatologist at the Unit to both get a second opinion but also have opportunity to ask more questions about where to go from there , and what you should ask the GP to investigate if it is not Behcets.

I don't know if you went armed with any photos of visible symptoms of your flares and inflammation and ulcers , if not , start taking photos to show them and make a diary of your symptoms and when they flare , this may help them through the confusion or give more evidence of Behcets.

Good luck , I know it must feel horrible being left hanging in the air after the hope you would finally get help and answers.

I am sure we all send you our thoughts and hugs , Bee x

[DR_JAB in reply to Blearyeyed]

No I've been going to CofE for 2 years. I don't have any signs at the moment as I'm on a lot of immunosuppression so I'm not sure how he can formulate an opinion. I was diagnosed by prof fortune and Prof D Cruz at St Thomas' when I was really poorly in 2016. They think the heart involvement is a rare complication of Behcets. All I know is that I feel awful. I'm also on this forum as juliebover but had to change my login for some reason.

[Blearyeyed in reply to DR_JAB]

If you have been going for so long and have a Behcets diagnosis already from other Specialists , this one Doctor can't take that diagnosis away from you , and obviously you are still on the books.

Because , to be honest , when you have Behcets you have it for life , you can treat the illness not cure it .

Not having Behcets issues at clinic doesn't mean it's gone , it just means the medication is working , a flare would soon kick off again if you stopped it.

And if your new , or growing , symptoms seem unusual to Behcets ,or unrelated to the condition, it is part of their responsibility to test what the causes could be , just in case you are suffering from issues that can occur from long term steroid or immunosuppression medications and they need to give you something to relieve that , or , make alterations to your medication to stop diseases caused by drug side effects.

I would just contact the Co E with a message for the attention of Professor Fortune in your case then , discussing your last appointment , your concern , and asking whatever questions you have regarding what they are considering . I think your original Specialists opinion is far more important in this instance than a Doctor who is new to your case.

Take care , Bee xx

[DR_JAB]

I've got appointments with my local rheum next Monday and at Guy's the following week. I will discuss things with them. I think a lot of the problem is how many specialists are involved and they all seem to have different opinions. Also under gastroenterology for the bowel ulceration and cardiologist for the myopericarditis. This rheumatologist told me to come off the steroids but the steroids seem to be the only thing that makes me feel a bit better. I'm struggling to work at the moment and feel guilty about that too. I just feel a wreck. Surely I should be feeling better if the Behcets is suppressed at the moment.

[Retriever]

Hi

I’m sorry you are now so confused. I have most of your symptoms - and others and most certainly I do have Behcets so it is a bit puzzling. I guess it’s a hard one to diagnose as there isn’t a single definitive test. It’s so hard waiting for all the different appointments too. I hope you manage to find a way through to understanding what is going on with you. Go well. Marilyn

[DR_JAB]

Has anyone else had heart involvement with their Behcets? Behcets seems the only unifying diagnosis which explains all of my signs and symptoms.