Behcet's Syndrome Society

Awaiting BS diagnosis

Hi guys I am going back to see consultant on Tuesday advised high probability of diagnosis been a helll of a long time coming,not really sure what to expect feel quite apprehensive & yet relieved at someone actually putting a name to it, been off work for a while now not sure ready to go back yet do most of you guys work and have normal lives mine has been at a stand still since January really need to feel better any advice suggestions welcome thank you .

4 Replies

Hi and welcome. BD does have different affects and symptoms on each of us. I have suffered for over 30 years and took 12 years plus to get a diagnosis. I have seen many changes in knowledge, treatments and meds all for the better. I have managed to work at least part time most of the time, have 2 more children and divorce and remarry, so yes life does go on but it's down to each individual. I know for certain that my children kept me going and a very good doctor.

My best advice is to take the meds when you need them, rest when you need to not just when you can,do, do try to exercise in some way even just a walk down the street as fresh air and exercise do the soul good. Also try to eat a sensible and healthy diet.

Be strong and positive and you can lead a good life .

Hope this helps and good luck with the doc!!!



Thanks so much for your reply Billi feeling less isolated .



My consultant thinks I have been suffering with BD since the birth of my son 40 years ago. I was not diagnosed until 14 years ago. In the meantime I had brought up both children, starting work when my son was eight and my daughter was five. Divorced two years later, worked full time and brought up the children on my own. I was nursing at the time, and thank goodness I had taken a degree in hospital management and social health before the children were born, because I was able to get a higher nursing position which did involve a lot of admin and not so much ward work.

When I was 46, I was very ill with the disease, and was misdiagnosed with Non-Hodgkin's Lymphoma, because my symptoms echoed that. I had almost a year off work during the chemotherapy, and recovery. Of course the treatment had killed my immune system so I felt better for a few years!

I retired at the grand old age of 63 and apart from the NHL debacle, had only the average time off work for sickness. This was due to my not letting this awful disease get the better of me...sheer bloody minded will power!

There were many times (mostly before diagnosis) when I wanted to throw in the towel and have time off because I felt so ill. Luckily I was in the right place (hospital) and my colleagues and the senior matron were aware that something was wrong and treated me kindly.

After my diagnosis, which was a huge relief, I received treatment which was a bit hit and miss to start with because there is no one treatment for this. Now in retirement, and on a regime which is working for me, my new husband and I live a very happy and active life, although there are some days I am not quite as active as I would like!

Do not give up. Most of us live normal, happy productive lives. I hope when you start a treatment which is good for you, you will feel able to start living a normal life again.

All the very best.


Thanks so much this helps me a lot work have been very good so far but at the moment don't think I could do a full day feel so weak & tired hopefully if I start on medication this will improve again thanks so much x


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