Really hoping someone can help been going round in circles for sooo long.
I get constant mouth sores it has been going on for over a year now, but they are not always the typical mouth full of ulcers people seem to get with Bechet's, sometime the ulcers are just one at a time , some times they are red sores , sometimes my tounge feels like its burning. The sores will sometimes be there a week or they will be gone in a few days then a few days later one will appear somewhere else in my mouth.
I also lost most of my central vision in one of my eyes last year, and have been having steroid injections once a month but the damage is done it was leaking fluid and caused scarring over my retina, with no explanation why? I have suggested Bechet's to my opthomoligist but he said there wasn't any inflammation in the eye so he doesn't think it can be Bechet's.
I also get sores down below , mainly fissures in back passage but also sore's up front in my lady bits, again there not always ulcer like, sometime's they are like blister's but normally just one at a time, I have been to the clinic so many times had them all tested always comes back negative but with no answer to what it could be? I am in constant pain down below have been told I have Vulvodyina and also get weird nerve pains in my hand and face.
I read everyone's experiences and some sound very similar, some seem to have thing's alot worse can you get Bechet's mildy?
Has anyone had similar experience, I need to go back and speak to the Doctor but just would like to get other people's views, on what they think or if anyone has similar experiences.
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Helend1234
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Hi there, you sound like you have a b vitamin deficiency. I personally have behcets and later to discover i have pernicious anemia.
turns out, being low in b vitamins can also cause ulcers in the mucosal membranes.... who would have thought... and did you know that certain meds, and chronic stress and inflammation also depletes b vitamins.
anywhoo, my mouth would frequently burn, ulcerate, nerve pains etc etc. not to mention the brain fog and low energy which is exactly like my behcets.
i would recommend next blood work to get you your b12, b6, honestly even a megaloblastic anemia panel done ( 706960 Test number)( i can give you labcorp codes if you need them)
and if you would like to be tested for pernicious anemia and rule it out bc WHY NOT- you need to have your intrinsic factor and parietal cell antibody checked (also a simple blood test).
either way, any level under 400 for b12 needs supplementation. I am currently on a shot a week and i finally feel like i am living....(34F) also when i flare now, its not as severe. B vitamins are responsible for so many things.
so get it checked, here for any other questions if you need it. good luck and keep pushing for yourself and be your best advocate!
be sure to read the ranges, theyve told me for years everything was fine except that i was either a little out of range or borderline..... and i was not fine. example- my b12 was 349..... range was 350-1200
Hello, Sorry to read you are having such a tough time. I can answer one question for you and that is that yes you can have different severities of Behcet’s, and most people with it have a different mix of symptoms. I have been diagnosed and my ulcers are milder than what you have described. I was able to get my referral to the Behcet’s Centre of Excellence in London on the strength of genital and mouth ulcers, migraines and red marks on my legs. If you are in England ask you GP to refer you. It took 3 years from my first visit to be diagnosed. Even though I didn’t have an official diagnosis on the first visit I was prescribed medication including something for mouth ulcers and kept on the books for yearly visits. Hope this helps. Best wishes.
Thank you so much for replying, mine are constant but not always ulcers just sometimes sores. I also suffer migraines. And have weird marks & rashes all over my body which I have been taking photos of. Thank you, my doc is sending me for some bloods tomorrow so will see what comes back then suggest this to him.
Hello, my partner had all ulcers in his mouth and problems with eyes. We went around in circles and in the end was diagnosed with Pemphigus vulgaris and is a very rare condition caused with the immune system. A biopsy does confirm it and is dealt with by a dermatologist. Good luck x
Hi I have mild behcets and also have lost some vision in one eye with no inflammation. It has been put down to nerve damage in my brain after having meningitis (which may also have been caused by behcets inflammation). I too have been diagnosed by Liverpool cenre of excellence after being told by countless consultants that it wasn't behcets for one reason or another. I too would recommend asking your gp for a referral. It has involved a lot of watching and waiting for me to get a diagnosis because much of what I suffer does not fit with the classic presentation for behcets. I am now on Azathioprine and colchicine and doing much better. I also have recently been diagnosed with haemochromatosis which causes an overlap of some symptoms Don't be put off by dismissals from consultants, and push for a referral. Kerp a diary of any symptoms and take lots of photos as this really helps with a diagnosis. Also ask if not behcets what else could it be. Good luck. I hope you get some answers soon.
Oh really, thank you for replying lovely. You don't just loose your vision for no reason do you?! They have done some more bloods and are hopefully ringing me back today, so I am going to ask them to refer me , Ill ask for the Liverpool one. Im not sure if you can private message on here but I will try message you! I have lots of pics and started to do a diary! x
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Please help me - how does the diagnoise work?
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Hello All! I was told yesterday that my rheumatologist is 99% certain I have Behcert's
Suffering in silence
