Behcet's Syndrome Society
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Confused

I was told last year that I had behcets from my doctor at the hospital in Bristol , after being so sick I asked to go to Birmingham to the COE I went there last week and was told I have incomplete behcets as I don't have any eye problems yet , but then he said some people with eye problems

don't have all my symptoms , I told him I was confused and he said well another doctor could look at you and say it's complete behcets ,, he checked me over by stroking my hand and said I had rheumatoid arthritis but with no other test then rubbing my painfull hand ,, I couldn't see the eye doctor that day as there wasn't one there , I was told I needed a splint but didn't have any so would send me one out on Friday and still no sign of one and can't get a reply from calls or emails ,, feeling confused as I just don't understand any of it :(

17 Replies
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Hi Sam, I understand how you must be feeling but remember one thing...it isn't YOU!!

I have suffered BD for 30 years and it toke over 12 years for diagnosis. I would visit many, many hospitals and be told a particular symptom was not Behcets and so I was moved on to another hospital and another doctor and so and so on. After diagnosis which was decided by a majority vote (seriously) my main doc said it was incomplete mild BD. For another 15 years I still presented with varying symptoms eg. Fevers, fatigue, painful skin, head itching and sores, ear problems and was led to believe I must have some other disease or I was a Hypercondriac . I stopped going to the docs except for my 6 monthly checks where I would bring along my diary and photos. Slowly, very slowly I was told that a particular symptom could be linked with Bechets etc and this is how it have been ever since.

The GOOD NEWS is ....I am not losing my mind, lots and lots of other BD sufferers from all over the world who I have never met are suffering the same symptoms as we are. Some of their docs believe the symptoms are BD and some not. So over 30 years there have been some great breakthroughs with BD there is still not enough shared knowledge about the disease and it's paths.

Hope this helps you to feel a little better in your mind and remember we are most of us in the same boat. We just have to stick together, help each other and share our problems.

Take care

Hugs billi

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I have incomplete or probable Behcet and attend the Birmingham COE, like you I don't have all the symptoms required for a full diagnosis.....and I don't want to get them. I've been trying to get hold of the clinic this week and the nurse is on annual leave and you are quite correct that messages are not being returned that are left on the landline....just left a message with the support worker Janine and get right back to you when I hear from her as to whether clinic is open this week. Jill

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well done goodlife...I note the support worker has replied below...it is good to get her input isn't it.

I was going to advise contacting the clinic nurse, but now see there's a problem with contacting by phone.....hopefully it will be resolved soon

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Thank you , I also don't want the other stuff that comes with it , the doctor said as soon as I get the eye problem I'm complete , but fingers crossed my eyes stay heathly x

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Hi all

I apologise for any problems you have been having regarding contacting the Birmingham COE. I understand that there were issues last week with the phone lines being changed as the staff had moved office but was advised that patients could contact Debbie via her mobile. I have tried calling the various numbers today myself and have had the same problem with automated messages and not being able to get through to any of the team. I have left a message for Vicki Sewell the administrator to contact me to let me know what the situation is and I will update you as soon as I hear from her.

There are no clinics booked this week. Apologies for any inconvenience caused and I will update as soon as I can find anything out

Janine Pugh

Behcets support worker

Birmingham

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Our lovely Support worker Janine looking after us ...... Thx Janine!

Ps.....Andrea email you shortly xxx

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Our nurse Debbie is just picking up messages.....I think it's amazing that within a couple of hours of posting a message we get a response. I don't think that level of service can be beaten anywhere else within the Nhs. Thanks to all at the COE who work so hard....it can be a scary illness and yet there is pretty much always someone to call for help. We are very fortunate :-) xx

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Had an email from Debbie , she was off work sick but will sort things out :)

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Hi all

Debbie is picking up messages now and can be contacted on her mobile. If anyone needs this no please message me via the forum and I will send you it

Sorry for any problems caused today. All hopefully being sorted now

Janine

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It is great to have your input Janine...I personally don't attend the Birmingham C.O.E but like to be able to advise people here on the forum with the correct info....and so this really helps

Thanks

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Thanks Andrea it's no problem. I'm glad to help and thanks to you and Gill for your input too. Hopefully all sorted now

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It can be frustrating. Ignore what they call it and just focus on one thing: getting the symptoms treated/pain managed. The same drugs are available whether you have complete or incomplete behcets.

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Gosh, how confusing I find this thread. I've never heard of incomplete or complete Behcet's. Not everyone gets eye problems but then not everyone gets everything, so why eyes specifically make it 'complete' is puzzling me.

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Yes Tigerfeet it puzzled me as well

Not everyone here has the eye symptoms or some other symptoms and yet have still been diagnosed with behcets. It was the added diagnosis of Rheumatoid Arthritis that really confused me.

My advice would have been to contact the Birmingham C.O.E nurse to talk it over with them but unfortunately the phones and changeover [explained by Janine the support worker] stop me from advising samhawks to contact them.

Hopefully samhawks has got the gist and private messaged Janine on swb1 to get the temporary mobile number that has been set up.

Hope this makes sense :D

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I don't really like open threads as we all know they are not private...I will start a new locked thread on the topic

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Hi all

Have just found this thread

One of the consultants wrote a note about me having BD 'not complete'

I just thought it funny as I think it's just a total complete and utter BD disease anyway.

I thought he was an incomplete consultant though!! : )

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No advice really just hang in there don't let them win take care xx

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