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Behçet's UK
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Been missing in action but Im still here!!

God but life has been hell since before Christmas......Lumbar puncture done Mri done and apt with neuro next week to get results...have had to fight to get an apt to get results but have it now.

Woke up this morning and heaven help us but im not good today. I feel sick, every bit of me hurts my balance is off, my walk looks like i am drunk!!! My speech is slurred too. I hate the word Random but i am going to have to use it, i am getting random pain, sharp stabbing pains in my head they can last 30 secs or 10 mins and take my breath away bit like being in labour.

Stress makes us all feel bad but what is does to Behcets survivors is just not fair! I am in full panic mode all the time at the moment and not sleeping which doesn't help and when i do i wake drowned in sweat and in so much pain in my joints...my doc refused to give me valium or sleeping tablets as i might get addicted......i told him that was the least of my worries but he wouldn't budge the swine.

Ok rant over sorry all but had to get off my chest x

7 Replies

Have you tried dulexotine antidepressant I am on it just recently and it has helped me with my sleep and my pain.


have been on zispin antidepressant for years they make other people sleep ok but not me lol x


Oh Hun........feel for ya babe !

I don't have any pearls of wisdom I'm afraid but just wanted to come on and give you a big hug and to say That I hope you feel better really soon. Mwah !!

Try to take it easy Hun and hope you get some solutions soon.

Take care,

Big hugs xx


thanks appreciate your hug just knowing there are others out there that understand helps soooo much. x


Makes me laugh about not wanting you (me) to get addicted. Obviously they haven't felt this much pain and sleeplessness. As you say addiction is the least of your worries.

Went to the dentist this morning and apparently the nerve pain in my tooth is me clenching them during the night - I was going to ask for a relaxant but maybe am pushing things.



Your situation is frightening. Hang in there is about all I can say. I was only diagnosed a couple of months ago as a result of pleurisy (thought I had broken a rib) and severe ulcers above and below. After two months on steroids, everything has been cleared up and from tomorrow I'm off medication entirely and hope I won't see Behcet's again for a couple of decades. (Bah, Behcet's!) Hope something clicks for you soon. Try relaxing as much as you can.


Hi Ruth I have literally just got back from my appt with consultant ( who wasn't there, so had to see a registrar. I have exactly the same symptoms as you plus quite a few ulcers below and one in mouth. I have a been feeling bad and worsening since November and really desperate for this appointment. Now I am not blaming the doctor, and a lot of what he said makes sense but I am back to square one. The doc didn't want to prescribe before checking it out with my prof and his hands are tied now by the way the NHS works. When I first started going to the hospital the prof would refer me I eternally to other depts as required, eg. Dermatology , ophthalmology etc. I also used to be given prescriptions to collect at the hospital pharmacy. All this has stopped for whatever reasons and a lot of the docs are as frustrated as we the patients are. To finish I now have to wait until my GP receives the docs letter with his advice for meds and other tests, then try to get an appt with same GP which could be a 3 week wait, on top to this I then have to do battle with said GP to get the meds and treatment needed and finally have another long wait for the outpatient apps at various clinics. And they say the NHS has improved....B..ll..ks !!!!!!!

OMG it was good to get that off my chest. I even feel a little bit better, maybe I can stomach a cup of tea and a scone.

Hugs and laughs



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