Is it worth going to see a rheumatologist? Help needed :-)

[oldc02]

Hi there,

I'm 23 and have had mouth ulcers (and down below too) since I was 15. The doctors seem to think that I have behcet's syndrome and want me to go and see a rheumatologist. Can anyone give me some advice on whether they have benefited from going to see a rheumatologist? I'm a bit unsure on what they could actually do for me and also I'd have to book time off for an appointment.

Any advice would be greatly appreciated.

Thanks

Claire

[Hidden]

Hi Claire, lots of us see Rheumatologists - they have experience of auto immune conditions.

My best advice to you is to take a little time sorting out who you think will be the best Specialist for you so that you can get the most from your appointment.

If you are in the UK we have three Centres of Excellence where Specialists who work in various aspects of BD are all in the same place, a good way of getting a diagnosis and sorting out who your main Consultant could be. Anyone in the UK can be referred to a Centre. There may not be one close to you but once you have been the first time or get your diagnosis, my understading is that you can then be referred on to a Specialist nearer to where you live.

Alternatively, the Society have a list of recommended Specialists and can advise you. It's well worth asking your doctor for a specific referral - a rheumatologist won't necessarily be an expert or specialist in BD.

The one your GP has in mind may be on the recommended list and the best person for you to see, but it's worth doing a bit of research first.

[Zebra]

I would. Which part of the UK are you living in/

[SuenMike]

Hello Claire.

I take it that you do not suffer from any of the joint pains some of us find one of the worst symptoms in Behcets Disease.

A lot of rheumatologists are experienced immunologists too, and are therefore experienced in immuno related conditions such as BD.

All the best x

[nicolakate]

It might be that you will get more help from seeing a dermatologist and/or gynaecologist if your worst symptoms are ulcerations. They can prescribe suitable topical treatments. If you can find a BD clinic to attend you may be able to see both of the above and a Rheumatologist all together which saves on appointment times and ensures you have people who know about your illness all together.

Good luck

Nicola

[oldc02]

Hi everyone,

Thank you for your advice I haven't booked in with the Rheumatologist yet. I live in Staffordshire and I know that there is a BD specialist centre in Birmingham so not too far! If I booked in with the Rheumatologist would they be able to refer me to a BD specialist? No I don't have any joint pains just mainly ulceration. When did you start receiving joint pains?

Hope you're all well x

[kpie]

Yes..... my rheumatologist was incredibly helpful, knowledgeable, and didn't just write me a prescription and hurry me out the door. He first put me on Cymbalta for fibromyalgia after 3 years of symptoms. About 1 1/2 years ago, my dermatologist did a biopsy on my lip during what turned out to be a Behcet's outbreak. She diagnosed me and suggested that my rheumatologist be in charge of my case..... referring me to the various doctors I would need to see. I think that it is vital to have one Dr. be the leader in your treatment, and my rheumatologist knew more about how to effectively treat my Behcet's and fibromyalgia on a long term basis than any other doctor. I hope this helps.... and also that you get a good rheumatologist! Sometimes that is an issue! Good Luck! 👍