Boston area BD specialist

[Mandi123]

I recently saw a rheumatologist who said he's pretty sure I have Behçet's with all my weird symptoms/flares over the years. He did a bunch of bloodwork and it all can back negative so now he isn't so sure. The only problem is I wasn't having any active symptoms except a mouth ulcer. Does your blood work always have to show inflammation even when you're not having active symptoms? Does anyone know of a BD specialist in the Boston area?

I'm such so frustrated because I hadn't heard of BD until he mentioned it. It seems to explain all of my symptoms over the years.

Thanks!

[magician]

Hello! Sorry to hear of your predicament, which seems to be among the many common experiences we share.

I was initially diagnosed with probable BD - like you, I had the symptoms (not all) but the blood tests came back negative. At some point the doctors dropped "probable".

Not addressing your q about specialists as I have no clue about the medical scene in the US - except for a Dr Yuzuf Yazici, reputedly a BD specialist, based in NY. I would have wanted to consult him, but tbe distance makes it impractical for me.

All the best

[billi]

Actually there are no tests or bloods etc for Behcets. In UK to get a diagnosis you must have at least three symptoms at once and even then it can take on average 10 years for diagnosis!!!,

Try using a CLENIL inhaler on your mouth ulcers, use a couple of puffs, hold in for a few seconds then blow out, do not swallow!! Are you in the UK, if so there are centres of Excellence in LONDON, BIRMINGHAM and LIVERPOOL. You will need a referral from your doctor.

Good luck

Billi

[jzeis]

Hi Mandi, Dr. John Stone at MGH is supposed to be excellent. He's the Director of Clinical Rheumatology (massgeneral.org/doctors/doc.... I've never met with him, but I've heard good things about him from other BDers.

I live in central Mass and my main BD specialist for years has been my uveitis specialist, Dr. Stephen Foster at MERSI in Waltham (mersi.com). Also, I just found an awesome rheumatologist close to home in Mendon, MA -- Dr. Kerri Batra. She's not a BD specialist but is VERY willing to work with her patients to get the help they need (tricountymedical.org/doctor....

BTW, many BD patients don't show inflammation in their bloodwork even if they have active BD symptoms.

If you're still looking for answers about BD, please check out the table of contents for my latest Behcet's book: bit.ly/1vgpeNM . It just won a 2015 National Health Education Merit Award for Patient Education.

All the best!

Joanne Zeis

(PS it took 17 years to get my diagnosis, so I understand how frustrating it can be to go through all those symptoms and not have answers.)

[Mandi123 in reply to jzeis]

Hi! Thanks so much for your reply. I'm currently seeing a neuro oncologist for a possible tumor in my brainstem. However they're second guess was inflammation. Since it seems the lesion is less visible over the past 4 1/2 years, I'm thinking they are now leaning towards inflammation. Maybe I'll look into seeing Dr. Stone since a lot of my medical info is there. The rheumatologist I saw was at Tufts. I will definitely take a look at your book!

Thanks again!

[nurse_ratchet]

That's the frustrating thing.....I find the blood work (ESR ,etc) doesn't always reflect how crappy you feel. Sometimes it does and sometimes it doesn't. I do believe others have stated the very same thing. Have you had CRP done (blood test, C-reactive protein) or checked for HLA-B 51......I happen to test positive for the latter, which I hear is not common in Caucasian folks.

Good luck to you

Gen

[Mandi123 in reply to nurse_ratchet]

He did test CRP and It was normal. I know it has been elevated off and on over the years. I wasn't tested for the latter though. is that for a specific gene?

[nurse_ratchet in reply to Mandi123]

Yes, the HLA-B51 is the gene associated with BD. So if you test positive (like myself) and are symptomatic-there you go, BD it is. However you can have BD and still test negative for the gene- apparently most north americans rarely test positive, but that doesn't exclude you fr having BD. I just happen to be the less common Caucasian female who tested positive. As far as I'm concerned, I'm pretty confident I've had this all my life. I was a colicky baby, gut problems all my life and cankers fr as far as I can remember! I will private msg you about the specialists, but if I were you-go with the ones that Joanne Z. listed:)

Good luck!

Gen