After CT scans, MRI scans, Angiograms the lot, I was told today that I am imagining my peripheral vision loss, vision loss, and that my memory loss is due to my pain levels. Finally my balance is off because I am over weight. He spoke to me sitting on my bed with 4 of his underlings around my bed all stairing at me. Off course because of my vision I just saw shadows. The consultant also questioned my Rheumatologists diagnosis of Behcets even though my mouth is full of sores just now and my joints are swollen. I am so exhausted and beyond fed up with people not understanding the effect behcets has on our lives. I can only hope that when I see my rheumy soon she gets me the help I need. I feel helpless as if my brain is not working. I am so unhappy with the medical profession. It has let me down for the past 18 years. If all tests are negative why am I in so much disorder with balance, eyesight and memory.
The Southern General Fiasco!: After CT scans... - Behçet's UK
The Southern General Fiasco!
Oh no Jazzy !!!
I am so sorry this has ended up this way. I have had very similar situations in the past, with neurologists in particular.
I had one neurologist [who saw me in hospital for approx 5 mins] said I had a mental condition called somertisation, which basicly means I was making up my own symptoms. He referred me to a psychiatrist without me knowing and he wasn't even my Doctor.
My rheumatologist was fuming with the way I was treated and that he had gone against his diagnosis of behcets. He started taking photographs of my ulcers and blisters etc and placing them on file. He also, listed all his own neurological findings on my reports and assisted me with the new neurologist.
I have now found a good neurologist who understands my condition and works alongside the rheumatologist and so there are good doctors out there. Also, strangely many of the negative tests results are now showing positive and proving what I had been saying all that time.
Maybe, your rheumatologist will know of someone appropriate to help you and he can write the letter of referral or write to your G.P or even better could you get the appointment with the Rheumatologist brought forward?
You must be thoroughly exhausted and feeling completely lost. After all those days in hospital you will need to rest up and treat yourself carefully. It is a small piece of advice, but I find if I can manage to rest it does help all my symptoms including the balance, eyesight and memory.
That way you build up your energy enough to carry on again.
I know how difficult it is to keep going sometimes and so remember we are here to listen if you feel you want to talk.
Please take care
Andrea
awww jazzy I so feel for you ((hugs))
After many years of being fobbed off and yes also being told I was depressed when I was seen by someone who knew of Bechets it all came together. I am seen by 3 proffesors at The London Hospital in Whitchapel and they all work together I feel so lucky after all this time. I wish you had the same experience as I have now.
Hang in there
sharon
Thankyou so very much. I will hopefully see my rheumatologist when she comes back from her holidays. Will let you know how I get on.
Blessings Jazzt.
Thank you for your kind words. I will keep positive.I have had a small tremor since leaving hospital just like shivering when you are cold. Have you ever had this.
Hi Jazzy
Yes I get it quite often along with chattering teeth, particulary when I am trying to rest when I have overdone so much..
I had a lot of tremors in the beginning but don't get them so much now.
I am glad you will be seeing your rheumatologist soon.
Take care of yourself
Andrea
Hiya,
It breaks my heart when I read about how some people with Behcets are treated! I am so sorry it happens all to often. Many years ago when I was being passed from pillar to post, trying to find out what was wrong with me, I was told by a Locum Doctor to go home & ask my husband what he had been 'up to' or whether or not he was 'playing away' from home because I had herpes and 'it may be time to boot him into touch'!! We had three young children and were very happy at the time! Can you imagine how I felt?! 41yrs later, children grown & seven grandchildren later we still are!!!!
There are some really great doctors out there but we need more. You have to kiss lots of frogs before you find your prince - so the saying goes, which is why we need to stick up for ourselves, however, when you feel like death, every part of your body is in some sort of pain and you feel no one is listening to you, it is hard.
Look after yourselves and rest up when you can. We are here to help if you need to chat, have a moan etc! Also you could also call they Behcets Society Helpline. Every person on the Helpline has Behcets or is a Partner or Carer of someone with Behcets. So they know exactly what you are going through or how you are feeling. They offer a listening ear as well as trying to do their best to help in any way they can.
In the meantime, look after yourselves, try to keep positive and remember life is what you make it! Give in when you have to but try to keep going!! X
It is appalling how we as humans are treated by various members of the medical profession.
I, as well probably everyone with behcets been told that it's all in my mind I'm depressed oh and for woman suffers its my hormones. It's bad enough we have this horrid illness that we have to fight the medical profession too, even when diagnosed.
I'm so sorry you're being made to feel like this, it's bad enough to have an illness like this without the added stress from so called professionals.
I hope that you don't loose your sprite because of that idiot! We understand your problems and know they are for real. I get these symptoms when I am having a bad attack and the only thing that helps is complete rest, which can take months to get better.
Take care, and keep fighting.......
Your not alone.
Lots of love.
Anna x
Thank you so very much. I have had a horrible shaky feeling since I came home yesterday and off course the peripheral vision loss is still there. Neurologists are a diff.erent species I feel
Hi all, especially Jazzy, I do not have Behcets, but my daughter does, she suffered all her teenage years, ulcers inside and out, eye problems, joint problems, passing and vomiting blood, and it took over 8 years for her to be diagnosed. She was told so often there was nothing wrong, and suffered great humiliation at he hands of thoughtless medics jumping to to the sexually transmitted disease conclusion over and over. They kept saying the bloods were wrong, saying they were afro Caribbean type. She has to have blood taken from her feet now as they veins in her arms are in such a poor state. Behcets is such a chameleon illness, so difficult to diagnose. If you can take pictures and keep a diary it is a great help, but please don't give up, you will find a good doctor/consultant eventually who actually understands what you're going through.
Take care and don't be fobbed off, gentle hugs Kat
Aww, Jazzy, I'm so sorry I've come to this late. To be honest, I've only just discovered this bit of the site - stoopid or what!
I hope you're feeling a bit more positive today; you have every reason to because, although a large proportion of the medical profession appear to be ignorant, there are some diamonds out there. More than that though - you are now part of such a supportive community. Isn't it wonderful to have this platform to air your worries and stresses with people who KNOW you are not imagining it all or being a hypochondriac.
I can't say anything really useful but I am sending warm, comforting hugs, along with the hope that you will find your diamond doc very soon.
xxx
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