new to this site

[scruffy1]

hi everyone i was diagnosed with bd last sept after 8 yrs of on and off illness.The doctor i was under was never interested in my symptoms so i changed to a different doctor in the same practice and within 5 months i had a confirmed diagnosis BD,but because i was left to my own devices for so long i have most all symptoms and am getting flare up every few weeks which as all you guys know are pretty hard to deal with.I am on 50mg pred,dapsone 20mg and humira weekly and this has been changed up and down and different cocktails of meds since last sept.I am so lucky to have gotten a diagnosis after thinking i was going nuts and only for the support i have from my wife and grown up kids i would be lost i have drawn great support from this site and the information is great as i am living in ireland info is scarce to say the least to all on this site keep fighting the good fight and dont let it beat you thanks to all for the posts and blogs

[andreafm]

Hi scruffy1

I like the name is there a reason for it

It is quite a brave a move to change G.P's especially when you are ill and nobody knows what's wrong with you...it just goes to show that you do need to have the right doctors on board. I am glad it paid off for you but not glad that you are suffering so much.

There are some other members living in ireland and so perhaps they will come and join in in due course...not that it matters where you come from.

In the meantime welcome to you and hope you find it as useful and as much a comfort as I do..I am sure that you will

Andrea

[scruffy1 in reply to andreafm]

hello andrea thanks for the reply to answer the first question scruffy is my dogs name and like him i am a bit of a scruff myself we got him as a rescue dog 6 yrs ago when i thought i was going nuts and he saved my sanity hes almost human.he knows when i am having a bad run of it and will stay with me all the time until i start improving.as for the irish side of things my rheumy was able to get a leaflet from the british arthritus foundation as there are so few people have bd here there is no funding at all and hopefully you are right and more of the bd brigade will come on this site and maybe work together to improve that situation i have been browsing this site since diagnosis and was working up the courage to post and its been well worth it.that feeling of isolation is lifting and that in itself is most welcome thanks again andrea and this site and all on it have already helped in just trying to understand the whole bd story,keep fighting and never give up!!

[behcetshurtsbeyondwords]

Hello

Your story sounds eerily familiar-- I am quite sure that it sounds this way to many others on here as well. I am pretty much in a similar situation to you, as I also went almost 8 years bein sick and developing more and more distressing symptoms; and because no doctor would bother taking the time with me to put all of the pieces together to come to a true diagnosis (which also meant no real treatment) and so I just continued to get sicker and sicker-- by the time I was actually diagnosed a year and a half ago, I was in such a bad flare and my entire body had blown up like a puffer fish, and none of the treatments are able to settle anything down.

My rheumatologist sounds much like your old one, as he was able to diagnose me with Behcet's, but hasn't really been trying to help me. At the beginning, he tried a few different med combinations, but I continued getting worse. He fought with our healthcare system (I live in Canada) to get Remicade/Infliximab approved (because here its only been FDA approved for Chron's disease/ Colitis and RA). Basically he has just left me on this now for a year (he just continued to increase it every 6 wks), and I keep plugging along on it, but now I am basically at the max dose and still no real improvement. Actually in some ways I am doing worse than I was at the beginning of treatment, but he doesn't seem to believe me. Basically my appointments with him have become a short 4 mins, with 3 of them him sitting there writing notes in my chart (or it could be from his previous patient... who knows) and then the last minute, him just saying "well, you have to just be patient with the Remicade."

I think I have been very patient seeing as I have gone an entire year waiting for it to work. He doesn't even really ask how things are anymore or care to listen to my issues (he thinks my issues are just "complaints" and that its expected because I have Behcet's). He rarely even does bloodwork to monitor things, and anytime that I have had it done, its because I told him I needed to have it done.

The problem is that we only have a few rheumatologists here in my province and they won't approve to send me elsewhere. I've been told that I am the only one in all of Manitoba with a known case of Behcet's Disease, so I understand that he doesn't know much about it, but he won't even bother trying to learn anything or look into other treatment options for me. I'm now in the process of waiting for my GP to contact a new rheumatologist, which will have to be at the arthritis clinic at our teaching hospital-- the same place that continuously dismissed me and told me that I had no autoimmune disease. I'm am praying that things will be different this time because I have a confirmed diagnosis, and also they have a lot of residents and med students there, so maybe one of them thats fresh out of school would've learned about Behcet's recently... thats if they learn about it in med school!

I can completely relate to you feeling as though you were going crazy.. I felt that way so many times while searching frantically for a diagnosis-- there were so many times where I would give into the doctors and basically just tell myself that I was crazy and that the pain I feel isn't real. It's very sad how this ends up happening to many of us-- and its really because of the doctors lack of knowledge, care, and support.

I hope that your new doctor is a good one and that they'll be able to and willing to help you greatly-- I'll be keeping you in my prayers for things to improve for you

Wishing you lots of strength and comfort-- and remember that we must never, ever give into this disease-- together, we can all fight through the darkened days of pain and anguish, and one day we will win the Behcet's battle

Take care,

Jenna

[scruffy1 in reply to behcetshurtsbeyondwords]

hello jenna so sorry to hear your story in regards to your treatment but like you the search for answers can be a long and mentally draining road.its a hard beast to pin down as you have discovered and so many other people also have.i am living in southern ireland and there are very few rhuemys who know enough about the bd to give you answers, like you i met with a rheumy and he did the same as you described wrote a few lines and looked at me as if i was some kind of hypocondriac he didnt give a hoot so i let him have it warts and all needless to mention he was slightly shocked and he passed me on to a human that actually cared and had some understanding of bd and she has been superb and along with my new gp i feel that things are on the up.i know your situation is not great at the moment but you have to keep pushing on as for the idea of being on remicide for a year with no improvement he is taking the easy road i have been on several drug cocktails and when i asked how come i was non so many different meds at one time i was informed that its a cocktail that should put the beast back in its box and then i would be weaned off most all meds how long that takes is anyones guess but i hope you feel better soon and get some real help from a doctor that understands your condition keep fighting the fight jenna and never give up together on this site we will all help each other mind yourself

regards scruffy1

[Wendymoo]

Hi Scruffy1, I am also new to the site it's helped me sooooooooo much. I'm glad you managed to find a doctor that managed to help you, but you do feel like your going crazy but what a relief when your told what it is. I hate my BD don't thnk I can ever except it like the doc's say I should, it has stopped me from doing all the things I had done before. But with the amount of morphine that they have put me on for pain relief I now feel like a 'junkie' If your ever offered it please please think very had as once you start its bloody hard to come off.

Keep us posted of your symptons and if you find anything that helps you.

Big hugs

wendy

[scruffy1 in reply to Wendymoo]

hello wendy thanks for the post i agree with you this site is superb everyone here is in the same boat in one way or another.putting a name on bd was such a relief but thats the start of the story its a long road and thanks to this site the isolation is gone and as for the morphine i was put on it two years ago by my first doc i think she thought i was a bit of a hypocondriac and it would cure all luckily after taking it my wife noticed i was becoming a bit of a zombie and got me back to the doctor and had me put on difene 75mg and that was a great tablet so much so that after two weeks on it i was able to wean off it and now i only use it when i cant take the pain any longer i have been in a state of flare up now for a good while blisters in the mouth swollen joints and generally just feeling like someone left the energy button in the off position but i am fighting every day to live as what i now call a normal life nothing like i used to be but thats life i suppose keep fighting the good fight and never give in kindest regards chris aka scruffy1!!!

[Shalom-yall]

Hi Scruffy,

I believe that's the story of most of us with Behcet's - years and years of suffering with these symptoms, disinterested or uneducated doctors on the subject, thinking we are Hypochondriacs. I went 15 or more years with the symptoms and went to at least 30 different doctors. I come from a very small town in the mountains and the doctors had no knowledge of it. I had been doing my own research for several years and I printed out info from the American Behcet's Association and Rare Disease Connect to present to my docs. One doctor (actually a Nurse Practitioner) was very interested and willing to explore it. But the symptoms got so severe that I had to move to a larger city to find help. Tampa Bay (USA) is one of the areas that does studies on Behcet's, so I am fortunate. But even so, most of the doctors here are like the ones described by Jenny - not too proactive. I wonder if they are intimidated by it? I finally found a great Rheumy who BELIEVES me and diagnosed me w/Bechet's. . And luckily I found an Ophthalmologist who treats Behcet's!

Do a lot of research. Join a Behcet's Organization that educates on all the particulars of this syndrom. They keep you updated on the newest findings and medications. Be insistent and unrelenting with your doctors! Give them the accredited medical information on Behcer's. I've had to educate some of my doctors on the subject.

No one knows your body like you do. Sometimes you have to be your own doctor. I wish you much luck in your journey and hope you find relief! You are not alone.

Beverly

[scruffy1]

hello beverly thanks for the reply i am glad to hear your story and glad you got results and you did it the hard way as i explained in my first post my doc thought i was gaga and treated me like some kind of space cadet but i caught a lucky break if you could call it that and saw a different doc in the same practice and hey presto a few months and ten different diagnosis later a result relief at last i did the same as you went on the abda site and other forums and began to educate myself as they say knowledge is power and i am passing on what i find to my doc and rheumy,like you i have eye involvement but here in ireland trying to explain bechets to the opthalmologist is like sucking water from a stone but i am staying with it and hopefully i will get somewhere i am so happy for you for persisting with it and getting the results you have and i agree with you i am always frank and pull no punches and try and be proactive with all dealings with the health professionals thanks so much for the information and hope you are feeling well,keep fighting the good fight and never give up

kindest regards chris aka scruffy1

[mbuck-60]

Even if you live in a big city it can still be difficult to find doctors that know anything about bd it took me 4 years after my specialist retired to find someone else they put me under a dermatologist who was only interested in my skin and nothing else until I kicked up a fuss then they put me under a rheumatologist who is now taking brilliant care of me although I am still suffering quite alot from ulcers and brain problems

[scruffy1]

hello and thanks for the post i am sorry to hear that it took so long to get another doctor who can or wants to understands bd i am also waiting to see a dermatologist as i am developing a really sore skin rash on my hands and arm and god only knows what is causing this new symptom and i agree that it is hard to find anyone who can wade through the beast that is bechets with all its different symptoms.like you i am getting ulcers even though i am on the immune surpressants they are and continue to be so very hard to cope with because eating anything other than soft food is impossible.also the brain problem issue must be very upsetting as a lot of people dont even realise that bd can effect the brain also but at least you are staying the course and kicking up a fuss as sometimes, as i have discovered its the only way to get anywhere with the doctors,look after yourself and keep fighting the good fight and never give up

regards chris!