Colorado doctors??

[thinkingtoomuch]

I've experienced mouth ulcers for years and now vulvar ulcers. Also have arthritis symptoms, headaches, tinnitus, stiff neck...though my GP and other docs agree my symptoms are indicative of auto-immune, none are familiar with Behcets. Any members from Colorado or even the US?

[seabird100]

I’m not medically qualified but doctors diagnosed my daughter with Behçet’s based on symptoms which sound like yours. In particular the vulval ulcers they said are often indicative of the disease. Is it possible to seek a second opinion?

[sam0511]

There is no formal test for Behcets, just diagnosis by symptoms. The first point of referral would be a rheumatologist. They are the ones that lead the treatment if you like. I would urge you to see one as soon as possible. I suffered the same symptoms as you for years, then I got eye involvement. Inflammation at the front then the back of the eye. It was only then things moved quickly and I am now taking Azathioprine. It has cost me useful sight in one eye, but the other was saved. My intention is not to scare you but to give you information so that you get referred quickly. Regarding the vulval ulcers, I stopped taking anti-inflammatories, and the ulcers improved. Something to do with the way Behcets sufferers react to them. Its worth a try. Good luck. I am in the UK.

[JollyHS]

Hello, I'm not in the US sorry but just wanted to add that I've just started taking a course of antiinflamatories and my ulcers are better. I would say that there is no one answer and the disease can manifest in different ways and different medications help different people with different symptoms. Good advise to keep an eye on your eyes! and a referal to a Rheumatologist is probabaly the best way to go from here. Good luck.

[rooser1]

baltimore md here. google rhuematogists in your area and call them. ask if they have a behcets patient. if not, find a rhuem that is willing to learn about the disease with you, bring print outs from ABDA.com

there is no test for BD, its diagnosed off symptoms. fun for us, not all symptoms appear at the same time so keep a log. but basically, you should be ruled out for everything, lupus, crohns.. etc

i myself had the stiff neck that actually was aseptic meningitis, oral and genital ulcers, (not always together) arthritis, skin rashes (pitysporum folliculitis), thrush, and the piece de resistance- i ended up with a sucrose intolerance.

jzeis has a ton of USA resources and made the name for BD in america

all in all, ask questions, be your advocate- google google google. Thats how i came up with my diagnosis, and just kept presenting it to doctors until one was like- YEP.

In the meantime, eat clean, cut sugars...drink all the water. get all the sleep. that will help.

good luck and keep us posted

[B-cubed]

I am from Colorado, and I am waiting for my diagnosis. I am HLA-B51 +, and I have so many symptoms. I commonly get blood vessels that pop with the slightest pressure along with sores in my mouth, on my scalp, face, ….. I’ve been seeking help for 20 years off and on. Since 2018, I’ve seen over 6 rheumatologists. I found that most rheumatologists in Colorado only look for more common diseases and have no problem sending you away after shaming you for wasting their time. I recently had a more hopeful appointment with Dr. Fischbach at National Jewish who specializes in BD. It took me over 4 months to get an appointment, but I think this is the best care for BD in the front range. I know my reply is late, but hopefully it is helpful.