Back to square one

Been up to see the rheumy with my daughter who after 4 years of pain and other symptoms was happy to be finally diagnosid with Bechet's but now dr has backtracked and is now saying it could be Bechet's or not. I am so upset and I am not the one who is suffering just wanted to share our experience this morning - has this happened to anyone else ?

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  • Unfortunately yes. So sorry to hear that it has happened to you. I am sure you will get lots of responses but meanwhile you may find this thread interesting: behcetsuk.healthunlocked.co...

  • Thanks Tigerfeet have read the thread my daughter was given a new drug hydroxychloroquine now to take with the colchine and we are to go back in 6 weeks so hopefully she with get some relief from pain.

  • Good morning hun, Yes...unfortuanately a lot of people go through the 'is it isn't it' thing a few times before it is finally confirmed. We can all sympathise but I really do understand how dissapointing and frustrating it all is. I can imagine it is very hard as a parent to be having this happen to your baby. The thing is, there must be some doubt in the rhuemy's mind to make them change their initial thoughts. At the end of the day... if it isn't BD then there is no point getting labelled as such. It just means that it's something else that's being missed and you can't afford to miss anything with any of these weird rare syndromes/diseases. Chin up. grit your teeth and soldier on......we're here to talk if you need us. Take care, big hugs to you and your daughter XX

  • I have had a possible Behcet' diagnosis for 7 or 8 years now (after 5 or 6 years of developing symptoms) but during that time the diagnosis has been a gradual thing. It was felt for a long time that this was the most appropriate diagnosis they could come up with, although I do not have a 'typical' set of symptoms. My diagnosis was considered a 'working' diagnosis for a long time as my consultant felt I either had an unusual form of Behcet's or another (probably as yet unidentified medically) autoimmune, neuro-inflammatory disease. The diagnosis is now referred to as definite, but there was no one point when the diagnosis was made. They have not completely ruled out MS with me though so my MRI's are regularly assessed.

    Looking at other people on this site it seems to me that there is no 'typical' set of symptoms for this disease which I think makes it hard for consultants to diagnose. I am now confident this diagnosis is right but I do understand that it was only unconfirmed as the consultant was checking nothing was missed that could help me.

    I know how frustrating it is and how important having a label seems to be, but I would say that as long as your daughter's consultant is taking her symptoms seriously and doing everything to help her then lacking a single name is not really a bad thing. A lot of these illnesses are treated in a similar way so I hope your daughter is getting help with her symptoms even if she has no definite diagnosis. This, of course, is the most important thing.

    I wish her and you lots of luck and I am sure she will appreciate your support at this time.

    Nicola

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