getting help with bechets ?

[bellaboo222]

hi everyone im new to this not too sure how it all works yet i suffer from bechets disease and i find it very difficult to get the medical help and support i need. alot of the time the doctor does not believe me alot of my symtoms are to do with the inflammation i get in my body it gives me lots of pain and bother im 18 years old and have terrible joint pain like and elderly lady would have my hair falls out and my eyes hurt and are painfull and can get very red. i suffer from many many more symptoms too many to list but wanted to know how i get my doctor to listen and help me

thanks

[belle623]

Hi

I am so sorry. It is so frusterating with docs sometimes. I found keeping a daily symptom diary and weekly picstures on my phone to show the doctors really helped. Also it is notmal to go through 5 Rheumatologists before finding one that is right for you. Are you in the US or Europe? Dr. Yazici at NYU is amazing! My angel. I know some in Seattle as well. If that helps. Keep hope if you need suggestions on day ways to help with pain let me know.

Hugs

Ash

[bellaboo222 in reply to belle623]

hi thanks for replyin i live in the uk its a liitle differnt here the doctors i speak to dont know much about it . i will have to start keeping a diary that sound like a good idea thank you

[JimParslow]

Keep going back, ask to see a different doctor.

You will know your body far better than any doctor, just keep telling them. Eventually they will listen.

[seath1972]

I would change your doctor my love. Hope you get sorted.

[MikeUK]

Hi Bella

Ive found the best people to talk to are not GP's, but specialists at the hospital. See if you can get regular appointments with a rheumatologist at your local hospital.

I go for 6 monthly appointments were I can discuss any new symptoms, and where they constantly adjust my medications to keep the balance.

Hope that helps.

[rooser1]

My advice goes along with the others. You need to find a new doctor. Some of the specialists I see every year are: my rheumatologist, urologist, ophthalmologist and gynecologist.

If I would have listened to the first 18(literally) doctors I would be diagnosed with herpes (I do not have) and ICC. Go find one that will listen.

be sure to keep a log of dates and when symptoms happen. along with medications taken. this is very helpful when seeing doctors!

Good luck.

[Norahm]

Where do you live?

In the UK we have behcets centre of excellence in London Birmingham and Liverpool. There's info on the behcets.org.uk website. Your go can refer you using the form on the site also.

If you are in Scotland, Wales or Ireland, it can be more difficult to gain a referral.

[jzeis]

Please provide info to your docs from the Behcet's Syndrome Society site (behcets.org.uk) or the American Behcet's Disease Association (behcets.com). If you want a book on BD instead, my latest Behcet's book has just won a National Health Information Merit Award for Patient Education (in the U.S.) You can see the Table of Contents here: bit.ly/1vgpeNM. (There's NO pressure to buy anything -- your local library may be able to get a copy for you.)

All the best,

Joanne Z.

[1995jayne]

You need someone to help you fight to get the help you need when you feel so bad it's very hard to do it on your own. Both I and my daughter, aged 19, have Behcet's. It took 25 years to diagnose mine and cost me my job as a nurse, this is not going to happen to my daughter. Her GP would not listen until I threatened then with a formal complaint, they now take her seriously. Changing your doctor may not be the answer, if you live in UK get a referral to one of the Centres of Excellance. Don't be a victim of someone's indifference, if you fight back you will get help. Good luck xxx