What is Behcets Disease
Behçet's disease (also known as Adamantiades-Behçet's disease), is a chronic condition due to disturbances in the bodys immune system. This system, which normally protects the bod...
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Hi,
I am new to this website, a client of mine from my job told me about this site she found as she struggles coping through her newly diagnosed auto-immune disease. I am a Behcets patient diagnosed spring of 2008 after having the beginning of eye problems seven yrs prior and a horrible six months suffering before my diagnosis. While at the moment I have been doing well those days of not knowing and feeling crazy and alone are fresh in my mind. Even now after a year and a few months I havent had one person even hear of Behcets when I mention it! So i decided I would try out this website. I did attend last years ABDA's Behcets Walk in NYC and saw people then but it wasnt anything too personal, but as least I know they existed! So I have been reading members post and seeing who is here and what is around to familiarize myself and see what others have to offer with experiences and knowledge. I have been lucky in having a doctor who specializes in Behcets and I feel as helped me alot. He is 2 hours away in NYC, but I am grateful I am this close in NJ. But now over time you get in a rut and it is good to see what others have tried and done and I can bring them to his attention and see what he thinks if it somethng I like the sound of or havent heard him mention. My biggest problem at the moment that seems to not be changing or getting resolved is this leg symptom. Have any of you experienced a painful sensation up and down your legs and maybe in your arms like someone pricking you with pins or bugs crawling on you or biting you?? The sensation is enough to cause pain and severe "itching" . This happens to me 99% of mornings and is worsened when I shave or I think in a quick change of temperature. It can last hours or a half hour. My ankles still swell by the end of every night..... Does anyone have any thoughts? Robyn Posted on 10/14/09, 11:10 pm |
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I have been having odd pains too. Just today it felt like a cross between getting jabbed with a needle and somebody putting out a hot cigarette on my skin, just in one small area. Nothing is there though, at least that I can see.
I was originally diagnosed with MS and Ulcerative Colitis, but I believe I have Behcets and my gastro says its entirely plausible. I am going to see a Rhumatologist on the 23rd. 
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I hear some people post on the MS forum who have Bechets. That board has a lot more traffic than here. Also there are some good groups for alternative and complementary treatments.....which is all we really have with these incurable conditions at this point.
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Thanks for responding. Hopefully you will get a solid diagnosis on the 23rd. When I was still trying to get diagnosed my blood work had come back for the first Lupus test as positive but then the secondary Lupus test came back negative. That was a sign to the rhuematologist that suggested Behcets but he was hesitant yet to clearly pinpoint it as that being so rare. I had read about MS and had found similiar symptoms I was experiencing he did clearly think that was not the case, due to things that clearly define MS. I have experienced nuerological Behcets symptoms that are only recently being comfimed as sypmtoms... altho I could of told them that a long time ago!!!
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Welcome Robyn,
I also joined ABDA but felt odd as many are "old-timers" and this is fairly new for me. It does feel alienating when people ask "You have WHAT?", I almost feel as if it would be better to have Lupus or RA, at least people recognize those. I deal with severe joint pain (which my Dr. says is not the norm for Behcets) and initially I would swell to elephant sizes. I also had a lacelike rash that would come and go, and was living on Benadryl. Since being on Enbrel (4 months, and am now moving to Remicade) the severe swelling has not occurred and my horrible bruised nodules improved a lot. But, now I am having a lot more ulcers: oral, vaginal, all over, as well as eye involvement. Hang in there, and know that we are all in this together, I hope to build a tightknit "family" of sorts here. ((Heather))
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Hi Robyn
I just saw your post. I was diagnosed with BD last May but got my first symptoms in 2006. BD is commonly misdiagnosed. Most people have oral and genital issues. I also have soft tissue swollen in my foot, joint soreness, numbness in the extremities and eye problems. I just read your profile and you've been through a lot. There are more people on the ABDA Behcet's chat line. At least two live in NJ, Paras and Dana. Paras is a regular and knows a lot. The colchicine and prednisone are pretty normal drugs for BD. I've heard of azathioprine (Imuran) but can't think of another on it. There are more people on remicade as an immunosuppresant. Irene on the chat line has really well on remicade. She's in Ireland and logs on early. It's critical to stop a flare before it does permanent damage. If you have a bad flare, you will need a large dose of prednisone. When the flare is over, you can go on maintenance. I went to the Behcet's center in NY and was proscribed praquenil, a rheumatoid arthritis med. There is a great summery of meds at http://www.behcets.com/site/pp.asp... The objective in this is to get into remission. I am also trying Tibetan medicine. In a miracle, I was treated by the Dali Lama's personal physician. Long story. The jury is still out on the results. The good news is that if you can get a remission, you can lead a normal life. Anything that activates your immune system can cause a flare. Trips to the dentist almost always cause at least a mini-flare. Other causes are allergies (food, pollen, mold), infections, stress, injuries. If there is any swelling, try to control it with naproxin or ibuprofen. Hope this helps. Please keep in touch. jack
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It is something to actually here people describing what I have had happen to me in the past 9 years of my life, since no one has ever heard of such things.. I started at 17 with red eyes and blurry double like vision, I went to my family eye doc multiple times and he sent me to a few others and then they basically told me it was dry eyes get over it!So years go by and sometimes it would be so frustrating and the same doctors now just thought I was crazy.
Then a few random curiousities happened through out the next seven years... But Oct of 2007 my eyes went so red for days couldnt see and got blisters on the eyelids, then the next thing besides feeling crappy was erythum nodusum so painful up and down my les and an my feet, my legs swelled up like you said diannna to elephant sizes, to the point i could barely walk from the pain. I couldnt fit in my shoes!!! Ofcourse a mouth full repeatidly of oral ulcers, and the long list continues of eye prob, colon probs, major fatigue prob, etc etc..and the list of meds to try... Now i am 5mg prednisone daily along with 150mg of Imuran. I am still flaring on my legs this horrbile pin prickling sensation that was only gone with higher doses of prednisone, which I was starting to react to and higher imuran which my white count was getting too low....But all in all when i remember last May I am grateful for how I feel today.
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I will have to try out the ABDA webpage for chat rooms again, Wow I am not the only one in NJ???
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Your maintenance state is still not too good. Since you are in NJ, you might want to visit it Behcet's center in NY city. Dr. Y deals with Behcet's folks all day and has a lot of experience. My Tibetan Dr., Dr. Marsha, is also in NY city; they're actually near each other. You might want to give it a try.
I log onto the Behcet's chat line around 5:00PM CDT on Saturday. At least you have a correct diagnosis. The next step is to know all your options. Hang in there Jack
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Hi Jack, thanks for your posts... I actually do see DR Yazici in the Behcets center and he is a life saver. I have been seeing him since summer 2008. He is the one prescribing the Imuran and i do trust him. He taught me about the ideal thing is to get into remission and a lot of the time it can stay that way. We are still working towards that . I have been sharing what I have been through but I do feel a lot a better, Dr Y is aware of my continuing leg condition and I see him again in Nov and we are to discuss that situation further.
Keep your fingers crossed for me on that appt!!! Thanks again for all your info!
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