Hi. I haven't written a post here yet but this site has been a massive source of reassurance over the last year or so since I was diagnosed with Bechets. Anyway, I was wondering if anyone else has experienced these symptoms? About 3 months ago I began getting pretty bad upper abdominal pain just behind my breastbone first thing in the morning. I just ignored it as I'm used to getting odd pains here and there that just go away after a while. Anyway, a few weeks after these pains started my sense of taste went really odd. Everything started to taste bitter and my tongue began to 'tingle'. Over the last couple of months the abdominal pain got worse and more frequent until now where it's with me all the time. Last week it got so bad that I stopped sleeping, the pain was going from my upper abdomen through to my back , shoulder blade and pain down my left arm. I was getting some reflux, sweats, flushes etc and was off my food. I noticed I'd also lost a fair bit of weight and had a lost of constipation and diarrhea. I went to a GP who put me in touch with a gastroentrologist. He was obviously quite concerned and said they'd test for pancreatic cancer among other things. Anyway, it probably goes without saying that I was pretty terrified, not for myself, but with thoughts of what would happen to my wife and young son. So he rushed me through an appointment (I'm lucky enough to still be clinging onto private health insurance from my work) and I went into hospital a couple of days later. They did a ct scan, bloods and a gastro endoscopy. Thank god they all came back clear for cancer but I was in such discomfort they kept me in for a couple of days. None of the drugs they gave me worked but luckily I was given morphine which meant I could at least sleep. Anyway, I'm back home now as there's nothing else they can do for me at the moment. Got a colonoscopy booked for 3 weeks time. Feel pretty rough but thankful it doesn't look like it's life threatening. Anyway, that's a pretty long rambling way of asking if anyone had experienced anything similar and if it could be the bechets? I'm 43 years old. Although with this random disease age doesn't seem to make a huge difference. Any thoughts very much appreciated. 
Bitter taste all the time and abdominal pain. - Behçet's UK
Bitter taste all the time and abdominal pain.
Sorry, I couldn't see a way of amending that post and just wanted to add I also get increasingly extended periods of feeling really shakey, nauseous and spun out as well.
Hi Chad,
Wow, you have been put through the ringer. I am so sorry. That is so stressful and scary.
I have had these same symptoms with my BD. That taste is aweful! 😝 For a multitude of reasons, one being acute pancreatitis I follow a strict nutrition plan. This has helped some with the upper abdominal pain. I commend for keeping a detailed list of symptoms and communicating with your doctor. But, no refinded food, grains or sugar = no panc pain.
Keep us posted!
Ash
Thanks Ash. Will let you know how I get on. I'm willing to try anything at the moment. I'd talked about diet with my BD specialist a while back but he was saying there's no evidence it actually helps. Although, there seems to be so much that the profession don't know in terms of this disease that I'm going to start looking at other options and diet is something I'll start today.
Hi
I to was diagnosed with Bechets Syndrome and tested positive for the HLA B51 I had all the usual symptoms mouth and gential ulcers constantly arthritis aching joints vasculitus ulcers in my eyes constantly Thrombilitus severe stomach and bowel pain and a bitter after taste constant superficial blood clots just under the skin 2 heart attacks a stroke last year in 56 yrs old and was been treated all these years for the symptoms and not the actual cause until I was seeing a haematologist by sheer luck he had noticed my eye ulcers and bruising and suspected Bechets that I was referred to a Rhumotologist who put me through all the standard test and confirmed Bechets the trouble I have us that none of my doctors at the GPs surgery know or understand the disease so cannot help me with flare ups and my hospital appointments are months in between due to shortage of doctors so if it wasn't for this site I wouldn't understand how this condition effects us and where not the only people suffering with it got a hospital appointment in the 22nd so hopefully I will get to know what the next step in my treatment is x
Hi I also have Behcet's and likewise get similar problems. I also add that some of the symptoms you describe like pain going through to your back sweats etc sound like they could be atrributed to pericarditis. That seems to always get missed. That is inflammation of the lining around the heart.
Anyway....what it really amounts too is that you need better control of your disease. How are you treated for the Behcet's at the moment?
Hi Maigrose, I'm not taking anything for the BD at the moment, well colchicine intermittently and pain killers but up until recently the flares have been spread far enough apart and just about manageable for short periods. This however is far worse than anything I've had so far. I was given a prescription for methotrexate a while back but hadn't wanted to start it due to all the side effects. Also at the time I hadn't ruled out having a second child (although the BD has kind of made that decision for me). I will ask my GP about Pericarditis. Thanks for that. Take care of yourself. C
Hi and know how you feel. I've been suffering for a year now. My symptoms are burping, flatulence, hot and cold and terrible taste in my mouth and sometimes difficulty swallowing. I had a colonoscopy and endocosopy a couple years back and it was fine. I honestly have never burped in my life before this started. They have tried me on all kinds of meds which either don't work or make me worse. Just now I'm on ranitidine and go back to the consultant in October. It seems to me they are just going to say IBS, which really is a cover all title because they don't know what it is or they don't have the funds. Don't know if these symptoms are similar to yours but if so maybe we could share information on privately messaging. Forgot to say these symptoms are much worse when I lie down, so like you I don't sleep well at all but I don't have a family to look after as they are all grown, so I'm sure it must be very difficult for you. Let me know what you think.
Billi
Hi Yes, Im on Ranitidine as well. That and Nexium and some other tablets. Nothing seems to make a dent in it tho. The only time I've felt better is when the nurse gave me some liquid morphine last week. As I've written below, things have been getting much worse over the last few days and not really sleeping at all now apart from an hour or so here and there. Will keep in touch hopefully there's a solution out there somewhere. Take care of yourself. Best. C
Hi. Sorry to hear you have been so poorly! Yes I do get that chest pain/reflux/heartburn - goes right up into jaw at times, down arm and through to my back too. I take daily losec and this seems to help . Also keeping a really "clean" diet really helps - no sugar, gluten free and no processed foods. Definitely makes a big difference. Any of your meds could be aggravating it too. I had to stop prednisone as this was causing really bad heartburn/chest pain . Hope they get it sorted for you.
Thanks Chris, Just rushing off to my GPs now. Thanks for the diet tips, I'll definitely try that. Will ask my GP about Losec as well. Are you on Methotrexte or any of the other BD drugs out of curiosity?
Many thanks,
C
Thanks everyone. I was going to reply individually but I guess most of it would be saying the same thing. My conditions worsened over the last few days and at most I get an hour of sleep before waking up with terrible pain in back/chest/abdomen, nausea and soaked in sweat. Absolutely, exhausted and spun out. Got an appointment with my GP today so hoping that will help. My gastroentrologist seems to have gone awol since I was in hospital so can't even speak to him at the moment. Oh well, fingers crossed. Will let everyone know if there's any news or conclusions. Thanks again. C
Hi one thing to add there is a great help group on facebook....more than one in fact...where people share experiences and tips. Behcet's Disease: you are not alone
Also uk Behcet's Contacts Only. If you can type that in and request to join they are great on this stuff.
Sounds like thrush in the mouth honestly.
My son is 8 and has had all those test and more his pain is a big part of his bechets and ulcers in his mouth that go all the way though his body his pain can only be treated with morphine too
I'm new here.
Sleep
Neurobechets
Great Doctor, diagnoses possibly!?
