What does that mean?

[Cherryann]

What does this mean, I attended the centre of excellence at Dudley rd hospital, not impressed. And was told I probably have Bechets. What does this mean, there is no follow up plan nothing, this has left me very confused and unsure what to do now can any one advise me?

[UKADMIN Partner Behcet's Syndrome Society]

Did you talk to the support worker who was at the clinic she can help with understanding the situation. Behcets has no test so diagnosis can take sometime it is better to get it right than label you with a disease you do not have. I will get the support worker to contact you.

[Cherryann]

Hi

Ok that makes sense, the support worker has been in touch, starlight away, thank you.

[behcetshurtsbeyondwords]

That is so horrible that doctors actually do stuff like this. They seem to so easily throw around their opinions and diagnoses of what it could be, which often times ends up being very blunt and ignorant to the patient. I've had this happen several times pre-diagnosis days, where a new specialist I saw would tell me things like "well I suspect its Lupus" or "you have somekind of autoimmune connective tissue disease"-- there were actually six different occasions where I was sure the doctor had diagnosed me with SLE Lupus-- she even started me on treatments that are usually more Lupus-specific (Hydroxychloroquine and sulfasalazine)-- then the next time I saw her, she said that its not necessarily so important as to what we call the illness, just as long as we get you feeling better. Then she stated my illness to be autoimmune-related, but non-specified, and then eventually when someone higher up than her in the clinic had gone over my case and realized none of my antibody or protein tests came back positive, and therefore, they undiagnosed me with any autoimmune disease. The last thing they said to me was "well you definitely don't have any autoimmune disease because your ANA is negative, so we can't help you anymore." What they don't realize is how detrimental this is to their patients-- especially when you've been sick for so long and searching desperately for a positive diagnosis so that you can begin the proper treatments to feel better and help prevent further complications. When someone finally receives a diagnosis, it changes that person's life immediately-- often it is a positive thing, depending on how long they've been sick for-- but either way, it will take its toll on the person right away from the moment their dr. tells them they have this disease. Then to find out that it isn't what they diagnosed you with, or they completely deny saying anything to you (which I've also had happen), is like someone slapping you in the face, telling you you're ugly and worthless, and stomping on your head-- at least that's how I felt-- it made me feel as if I was worthless and not important to anyone, that no doctor here on Earth would ever be willing to help me or want me to be better. Its awful. Basically what would happen after I was told I had a certain illness, like Lupus, I would go home and search the internet frantically for as much info as I could find. I would also see my GP right away and discuss it all with him, and what his thoughts were on it. But really, all you can do is count on the doctor and clinic who made the diagnosis.

Now, I'm not really sure where you can go from here. I don't live in the UK, but in Canada. I just wanted to let you know that this has happened to other people. Except for your sake, I hope that this diagnosis is correct and that nobody tries disputing it or taking it away. I guess the best thing to do would be to make contact with the clinic again, try setting a follow-up and go in with all your questions and concerns. If a doctor told you its probably Behcet's, then they should be willing to give you the time and care to help you.

Hope you can get some more answers and proper help. Take care and best wishes

-Jenna

[Cherryann]

Thank you, but I have to say that the support worker, is already on to it , sorry to embarrass you Janine but she has been pretty awesome.

[Kedaco]

I was told by two doctors and a Rumatologist that that I had Behcet's I had a bad flare-up and call my G.P. out to my house He look at me and said we will have to put you back into the system and then I got a appointment with another Rumatologist who said there was no sign of Behcet's I wasn't in a flare-up at the time but have had one every month for 7 months since they stopped my Incapacity benefit it must be the stress of having to look for work and being put on a course, I am now waiting to see a Specialist in London but don't have the money for train fair so probably wont be able to go (

[Zebra in reply to Kedaco]

I'm sorry to hear of your difficulties Kedaco. If you phone the London Behcet's Centre and speak with the Support Worker, Jean, they may be able to help with things like travel expenses or how to get there perhaps.

[Hidden in reply to Kedaco]

Hi there Kedaco,

Why don't you email me at [e-mail] or personal message me here and we can further discuss things like benefits and travel expenses. Zebra is right...I'm here to help!

jean