Seen the Rheumatologist

[Camp1997]

Hey everyone! I went and saw the rheumatologist yesterday, he was great. He listened to me and really thought it could be behcets. However, I don’t have any eye symptoms so he’s lenient on giving me a diagnosis. My genital ulcer is finally gone!! But left a huge scar, and now I’m started to get mouth ulcers again. I’m to keep on my colchicine for another 3 months, and go back to see him/get more blood work to see if my inflammation marker is high again. Really just don’t understand why they can say they are 98% positive you have it but can’t diagnose you because you don’t have inflammation of the eye...

[belle623]

Hey Camp

Uggg yes, that is a huge frustration. It’s like being 1 step away from the finishline and being told to stop. What I have learned, not all BD patients (thankfully) have all the symptoms. Rheum is the land of the weird kids lol. But, some times the Rheum’s can’t break out of their “boxes”.

If not being diagnosed continues, do you feel comfortable going back with studies proving not BD patients meet all symptoms?

I hope you are feeling well!

Ash

[Frustrated2 in reply to belle623]

Do you by chance have a link to those studies that “not all BD PATIENTS have all the symptoms”?

I’m seeing my rheumatologist later this month and would love to take that to her, she’s one of “THOSE WEIRD KIDS” that can’t break out of the box!! I need to show her the WAY!

Believe me I don’t have a problem calling her out either, I’ve been sick for over a year and dealing with this for over 28yrs. I have 2 doctors that eye doctor that believe it is BD but she says as of now I don’t meet the criteria but put me on colchicine....

I have been seeing improvements on that too. This will be my first 3 month following up appt after her putting me on it . SO maybe she will change her mind.. 🤷🏼‍♀️

I would love to have/know where to find the articles though.

Thank you..

[Stm252]

I've never had the classic eye sxs. I have this weird conjunctivitis dry eye stuff that may be considered mild uveitis but I can't "time" it right to be seen. That being said my pictures show it. I am still in the "probable" category now for a year but at least receiving treatment! It's a real pain to not have something definitive.

[SCMW]

Hi, my primary symptom was the oral ulceration. I had no idea I had issues in the genital region but had scarring on exam. I had the skin lesions and arthralgia. I presented with pain in the hip barely being able to walk last July 17. My rheumatologist gave a probable Behcets diagnosis in Sept 17. I was diagnosed formally May 18 at the London CofE. I didn’t show positive for the genetic marker and no one did a pathergy test. Also no high inflammation markers. So if you can keep a photo diary as this helped and see if you can be referred to a centre of excellence. Best wishes

[SCMW in reply to SCMW]

P.s no issues on eye exam, although a few odd events over the years, high pressures, unusual optic disc etc

[Camp1997 in reply to SCMW]

Thanks for your info! Hoping I can get some answers when I go back, I will for sure keep a picture diary.

[Number4]

Not everyone has eye problems and some that do don’t have that for years. I’ve read or head on video that there are symptoms that do come in pairs. Lesions of the genitals and mouth are the most common.

[rooser1]

I didn’t have any eye involvement except they mine have always been dry. I was diagnosed off of verbatim symptoms bc by the time I got an appt all my ulcers were gone. Colcrys is great. Always remember that your doctor should listen to you, you should never have to fight or prove something. If so, find a new dr.

[Frustrated2 in reply to rooser1]

Oh how I adore your encouragement!!

Glad we met on here!! It was one of my greatest joys out of this battle.

This goes the Same to you Stm252!!!