A&E being an absolute joke.

[MusicFreak2396]

Just rushed to A&E after a nose bleed that came out of my eyes!! Still didn't go entirely blind... But pretty darn close. I'm now home. They told me it wasn't an emergency as they had never heard of behcets and think I might have made it up. WHAT!? Feeling low and miserable now. Nosebleed has stopped and headache is back to normal brutality. How an ophthalmologist can turn someone away at 1am is beyond me. Has anyone else had this problem???

[behcetshurtsbeyondwords]

Oh my! That is absolutely ridiculous of them to just ignore you like that and then to have the nerve to tell you you're faking. I have never experienced blood coming out of my eyes, only just clear fluid/mucous.. but I would say that sounds like a major emergency and very scary. How can a doctor not believe you when you were sitting in front of them with bloody eyes-- that just makes them sound even dumber than they are. I am so sorry that you are having to go through this, and to top it off things seem to be getting worse and no one is helping you. I've experience many, many times similar to your experience with the emergency rooms and with ignorant doctors. I've had them deny me pain meds because they thought I was just there to get high-- they've even sent in a pain specialist who works at getting people of their meds in the ER when I was there during a severe attack. I was experiencing new pain that I had never felt before and was worried and I couldn't control it at home so I went to the ER-- she stood over me while I was starting to go into a seizure from the sheer amount of pain I was in, and she still continued on her rant about how I was just experiencing withdrawals and the pain wasn't real. It's so sad but so true that these horrific experiences occur way too often in the ER's-- before diagnosis, it was tough because they didn't believe any of my symptoms were real, especially the pain-- then once I had a diagnosis, they got mad at me for being there because apparently having a chronic disease means treating it as an out-patient, not relying on the hospital to look after you. They don't seem to understand or comprehend that sometimes chronic diseases flare up so badly that you no longer can control or bear the symptoms at home. I think of that kind of lack of care as being a form of negligence or even abuse. Anyways, I really hope and pray that you will get the help you so desperately need and very much deserve-- I also pray for your health and wellbeing in the meantime. Keep hanging in there the best you can

-Jenna

[MusicFreak2396]

Hi Jenna.

Im not feeling too bad this morning.. Back to the normal pain. Last night was terrible though. I had never felt a pain quite like it. I actually thought i was going to die just from the sheer unadulterated pain of it, I have woken up this morning and can only see non colour shadows in my Right eye. I hope God has other plans for me.. as i really dont want to go through my life without seeing my children and things like that.

Focusing on the fun things in life at the moment though.. Just pretending all is right with the world. Currently planning what to bake for my first support meeting at the bechets centre of excellence this thursday!!! I finally got my appointment through!! I only have to wait 10 days and this nightmare might finally be over! I might finally have a name to the monster, and finally have a chance to kick its butt!!!!

As always Jenna, your messages make me feel that little bit more human. I hope your disease is behaving itself (I will pray my absolute hardest that it is.) God bless always and forever, Siobhan x

PS- you are stronger than you can even dream. I can just feel it. We can get through this together

[behcetshurtsbeyondwords in reply to MusicFreak2396]

Yes you are right, we can get through this together-- just remember that you aren't alone in your suffering I'm glad that I can help give you a bit of support or comfort, but the truth is that you are doing that exact thing for me-- I have never had the chance to meet someone else with this illness, and I've also never talked to someone who is younger like me, until now (even though to you I might seem old already haha). But it is particularly difficult to be so sick at a young age-- its horrible and not fair at any age really, but it just seems that much more undeserved in a younger person or a child. I feel a special connection with you because I was about your age when I started becoming ill, so I can completely relate to what you are having to deal with. I know that you are also incredibly strong and courageous-- God wouldn't of allowed you to carry this burden otherwise. Just remember He will carry you through this.

That is so awesome that you are able to attend a support meeting! It should definitely help you in ways you can only imagine because you will be surrounded by others who also have Behcet's.. so I wish you all the best and hope that you can get some much needed support and comfort from that I am keeping you in my prayers as always and especially praying for your upcoming appointment that you will get a diagnosis and a proper treatment plan put into place. Talk to you again soon

-Jenna

[tamirra]

OMG this certainly needs reporting asap, don't leave it, how disgusting, i'm gobsmacked to be honest and lost for words, but just don't leave it to a bad experience. x x

[tamirra]

You also need his/her name to report it, and i would myself but this is just me, i would send to the American Behcets society for the information on Behcets and send it to him/her at the hospital. xx

[MrsBeau]

Yep, what Tamirra said. Report the Opthalmologist to his hospital, your area health authority and the BMA. No care given, admitted ignorance and poor attitude all round? Should be disciplined by his peers as well as his employer. No other medic would want to be associated with that sort of unprofessional behaviour.

[MrsBeau]

Why not go directly to the CofE for help - call them, tell them you're coming as you've exhausted all other avenues and you're terrified about the haemorrhage you had. You need care.

I would also be thinking about negligence: these people have a duty of care towards you. If it can be shown that they failed to meet the standard required in that care and as a result, you suffered damage, you could have a case....

[Jazzy21]

Get a card from behcets society then if you have to go to hospital again you just show the card. I know how you feel. Have a big hug! (((())))

[MusicFreak2396]

Hello!!

I always get a really swollen tear duct that stops my eye from closing!! It oozes and bleeds all over the place!! Not very attractive. I also get ulcers in my nostrils!!! Not very pleasant!!!

I will pray for you angel!!! xc