Just a rant.. because if i dont tell someone.. im going to expode.

[MusicFreak2396]

Hi everyone, im so sorry to bother you all again.

Birmingham CoE Havent yet given me an appointment, and im almost entirely blind in one eye and can only see colour and shapes in the other. Im really scared and desperate at the moment and im living off oramorph, morphine slow release, paracetamol, ibuprofen, pentagablin and steroids.

The mouth and genital ulcers are back with vengance, as is the explosive diarrhea and Skin blister/rash that just wont heal and keeps getting infected!!!. My knees, Ankles, back, shoulders and neck are all stiff, swollen and painful and its very hard to keep my head up with all the pain(Ive got to the level of wearing a neck brace) . Im having nosebleeds every night at the moment, and for some reason they help the headache a little bit.

The headaches are getting worse everyday.. and im now not leaving the house(Im suffering from photophobia at the moment too) . All of my glads and lymph nodes are swollen and painful.. And it feels like every movement hurts.

Im Having a lot of trouble swallowing at the moment too.. I get food or drink in my mouth and its like my brain hasnt got the message that i actually want to ingest it. It just sits there and i cant seem to grasp the "swallow" mechanism. Ive been choking a bit lately as a result..

Ive also got a bit of a chest infection and cough (Im sorry im ranting.. i just need someone to talk to.. even if no one reads this,.... )

The one thing i am VERY worried about is my legs and feet lately. I wake up after 2 hours of sleep in absolute agony,, because of my skin? Its like knives dragging across the skin, when its actually the quilt rubbing against the skin. The foot feels hot and swollen and numb and agonising. ALL AT THE SAME TIME...

I have to walk on it.. in tears.. Im worried.. as im travelling abroad in 14 days.. and obviously plane flights are notoriously good friends with the scary old DVT, (I had considered cancelling the holiday.. but i was told by my doctor to go.. as it may be the last one i can enjoy.)

If anyone can help me at all.. i would be entirely greatful. If not, then thank you for reading this and letting me get it off my chest,

[MusicFreak2396]

I've tried x they say theyve never heard of behcets... And that I should just wait until I get my appointment with CoE. Just hoping I get there soon enough. :/ x thanks for the reply though x

[Sunset in reply to MusicFreak2396]

Hi Siobhan;

Behcet's disease is considered idiopathic. Belirlenemiyen cause of disease in patients with medicines used to create different complications. Siobhan In 1985, the university confirmed the diagnosis of Behçet's disease. My suggestion to you who knows all the signs of where you live. I'm going to meet with teachers in 2013, which ensures the diagnosis of my illness. This meeting will be blessing for all of humanity. This information is now too much for me for 25 years, began to try to explain. I feel that I have to do this for all the people.

[AusBehcets]

Ring the Centre of Excellence straight away. Yes I have had no help from A&E lately. Even when I had thrombophlebitis in foot, warmth & swelling. My GP did check for DVT though & I did not have that.

I am very ill, no diagnosis yet, presented at another major teaching hospital, where I'm under a Neurogenetics Prof. I went to A&E there as I thought I was having a Lupus-like reaction to Dicloxacillin. I had stopped the drug already. All they said was "Stop the drug" and "I"m sorry we cannot help you with lethargy".

[xandii]

Maybe it's just me hun but I would be very reluctant to get on a plane right now with all the problems you are having. The actual flying itself can stir things up let alone being landed into a strange country where you are unsure of the medical facilities and help available.

I understand your doctor saying to go and enjoy it but with your constantly erupting symptoms I would think he would be more sensible to tell you to rest until your appointment comes up and in no even try to leave the country !

I am very surprised you feel well enough to entertain making a journey of this kind hun. Do you think a more sensible reconsideration of your situation may be beneficial right now ? Go on holiday after you feel you have resolved your problems and will enjoy a recovery relaxation break away at that time.

Just apply simple common sense if nothing else. okay ? Mwah ! Good luck.

tootles hun xx

[MrsBeau in reply to xandii]

I'm with Xandi on this - stress of travel, stress of flying and the risk of needing medical help abroad, which you will have to find and pay for as your medical insurance may not cover your Behcets....? Please consider staying home (or holiday in UK) until you have some measure of control.

I'd turn up at the CoE and simply ask for help. They are better placed than A&E to give you immediate assistance and should then arrange follow-up from there.

Beau

[lynnpru]

Please go to A and E or, as suggested above, ring the Centre of Excellence. We have a drop-in eye clinic at our local hospital - it's not as good as Moorfields etc, the key eye place in London, but it's still pretty damn good. Any opthamologist at all will take the symptoms you're describing incredibly seriously and they need treating. It's not at all OK to be losing your sight and there are things that can be done to treat that topically rather than systemically.... Sounds like you're in the middle of a really rough spell, hang in there xxx

[kenjay]

If you call the C of E in the morning I am sure they will be able to help you. They have emergency appointments available. I am sure the lead nurse, Debbie , at Birmingham will help you.. Do you have the direct number? As the others said above, I don't think I would risk flying and going abroad. That's probably not what you really want to hear, but do you really want to risk more problems with your health?

Hope you manage to sort something out quickly

[Dezie]

You need to keep calling and don't take no for answer. Hospital are so unhelpful, I have to call all the time to get any responds, basically I have to be annoying. Don't give up, they have to see you if your that bad, tell them you will turn up at the hospital and not leave until your seen. Hopefully your be a little better by your holiday, I think a bit of sun and away from usual routine life will help.

Here if you wanna chat.

Take it easy

Peace and love x