I have just signed up today in the Behcet's Syndrome Society as I feel so scared and lost. Since 5th February 2016 I have constant non relenting recurring multiple mouth ulcers. I have had more than 300 of these since then!! I have had two episodes of passing blood and mucus in my stool. The first was last Easter and it lasted for, four weeks and the second was in early February, this year and it lasted for eight weeks this time. I had a Colonoscopy and all was clear, no Crohn's. I get very sore spots on my upper body that are filled with puss. My feet, knees, arms and neck have been sore for a few years. My GP puts it down to my work as a plumber and getting older. I am now 57 years old. My eyes sting a lot and when I waken in the middle of the night, I find it almost impossible to open my eyes as the lids seem to have been forced shut! Two weeks ago I started having a dull headache that does not go away, even with over the counter pain killers.
My tongue swells up at times to nearly twice it's usual size and goes a very deep purple colour, instead of the nice pink colour that it used to be. I have showed my GP this and he quickly said....sorry I know nothing about tongues! My specialist at the hospital, whom I have only seen twice, will not entertain the words: Behcet's syndrome. I have mentioned it to him (because when I put my symptoms into my computer, Behcet's is what came up) and he said that in all his long career, he has only come across someone with Behcet's once, and as it is so rare, the chances of coming across a second case, is virtually impossible! I am not seeing a mouth specialist, regarding my mouth ulcers, until May this year.
On three occasions since 5th February 2015, for a two week period, my GP put me on Betamethosone 0.5mcg soluble tablets. These worked brilliantly at keeping the mouth ulcers away. Sadly after the two weeks....a few days later the ulcers are back and more vigourous and painful than ever!
Every single day I liquidise my food and drink it because I simply cannot chew! The pain is too much. Except for the three, two week periods when I was taking steroids, I have had mouth ulcers constantly! My mouth is full of scars. My GP just looks at me and tells me that there is nothing he can do!
I do not know if this is Behcet's. Can Behcet's suffers have mouth ulcers every single day for more than a year? Just recently I had two at the front of my tongue, which were at least a centimetre wide! I have never had these big ones on my tongue before! The ones on my tongue were very small and very painful. The big ones are usually on my gums and cheeks.
I would really appreciate it if any of you have advice for me, as I just do not know what to do and as time goes on, without any treatment, I find myself getting really scared.