Hi all I am a 40 yr old AA female in the U.S. I have neuro behcet's first symptom 19 yr ago but not dx till 10 yr later. So official dx hss been 9 yrs. I am having a wide range of complications and thanks to all these uneducated drs "practicing" medicine on me.
I have become extermely educated on all things BD. I strongly believe that the only way to conquer this monster, is to become our own advocate. With all these theories of treatment do u want to give informed consent for a pill or procedure, or do u want to just the drs guess?
I dont go to all these drs hoping to find that magical dr House that will help me. I go to the drs to get the things i dont have access to like meds or tests i need.
We will not find more accurate up to date information anywhere better than here together helping each other. BD is poorly researched by the medical field. Who has had a dr google what BD is ? Then they guess and throw u some meds. I have had some serious unmentioned side effects from pred and a few other common treatment plans. I do extensive research on any med, test, surgery, or what ever they suggest.
I would love to exchange our experiences on the un-fair journey we have all been forced on. Lets come together because there is strengthin numbers, we can finish this journey the best way possible. We cant let this defeat u, never give up, and stand up for ur rights to proper medical care. Even if its to the point of telling them how to treat u. No one will care more about our health than us.
I hope to meet every one of u my BD bro or sis.
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Savagevixen
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Some doctors do have to sort of guess when it comes to medicine and Behcet’s, but I don’t consider it practicing with quotes haha. I have also done my own research due to my body being resistant to some treatments and intolerant to others. I put my foot down when my old rheumatology clinic wanted to put me on steroids permanently along with oral chemo drugs permanently, since I have family with issues from a lifetime of steroids, and I always tolerated oral chemo drugs poorly.
In any event, I’ve had some success now with IVIG. Not enough that I’m off all other meds, I’ll likely be going on an oral med for managing my GI ulcers, and increasing my frequency of IVIG, but that’s nothing compared to how bad off I was just two years ago. My neurological issues had landed me in the hospital, and I was actually being talked to about admission to a nursing home. I was just 30, but I couldn’t walk, shower, or even accurately feed myself courtesy of tremors and reflexes going off with simple movements.
I still get some doctors acting as if my issues are psychological versus physiological sometimes, and that really angers me. I can be depressed and sick, and those two things can work together or separately. Ultimately it’s always a struggle and I’m happy to have this community online
Hi I am the same as you. NB. I'm 40. I had a flare late last year after almost getting better. This has been hell, I can't walk properly now. I'm using a frame or crutches. I need some strength
You probably already know about the Behcet's Syndrome Center in NYC? I've never been there, but I've heard they're willing to work with people's doctors long-distance on treatment. ( nyulangone.org/locations/be... )
I'm 62 and have had BD since I was 23. Uveitis and retinal problems have been my worst symptoms from the first day, and I've had pretty much everything else since then. Thank God I've only had one bad neuro flare (it lasted about a year) and almost no neuro issues since.
Nearly every flare I've had would show up the day before my period every month. My 20s and 30s were REALLY awful. I went through two pregnancies and now both kids are in their 20s and healthy I did two blog posts on pregnancy and BD, including results of a survey I did of 65 US women with BD who went through their own pregnancies. (You can see both posts here: behcets.blogspot.com/search... )
But I'm one of those BDers you hear about every once in a while who's actually gotten better as they get older. Once I finished going through menopause, things changed for me 100%. The only med on my shelf now is colchicine, and I actually don't need it anymore. If I get any BD-type symptoms, they're really mild and only last a couple of days, instead of hanging on for weeks and getting worse. I know not everyone's this lucky, but just wanted to let you know it's possible. I've felt this way for a couple of years now. Fingers crossed it keeps going.
Hang in there -- sounds like you've got the drive to make a difference -- I've been a BD advocate for a long time and we always need more
I can relate to everything you said. I have also needed to educate myself and guide my Dr's practice for the most part.
Yes, the tortuous neuro- Behcets. So very diffucult!!!
So limmiting, I'm so so tired tonight because i had to really push myself to ACT NORMAL for something important three days ago. As usual, due to the over excertion, for me, and stress I've been bed ridden for three days with alot of symptoms showing up as they usually do, and keep me just feeling so veey sick for up to two weeks or more, unless i up my prednisone; that's not something i like to do and try to ride it all out unless the various sourses of pain cause sleep deprivation. I also hate taking the extra pain meds for the torturous nerve pain in various places. My neuro-Behcets has "killed" my nervous system in various organ systems, worst of which is my digestive tract causing severe gasteoparisis. I have not been able to eat ANY food for 3 over 3 years now. Living on an elemental/ peptide based formula that saved my life.
I'm getting very depressed and bed ridden too much.
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