I have not been diagnosed yet but in the process of elimination. Here is my story. 6 years ago I woke up and had diarrhea and it has never stopped. Have had numerous colonoscopys, test etc... and all come back good no reason for the diarrhea. 5 years ago I started wretching and it has stopped either. 3 years ago I got floaters in my eyes, they come and go. All my joints mainly knees, feet and hands really started hurting. Over the last year it has hit my elbows, hands, knees and lower back really hard, it is dibilating. It last about 10 days and feels like something is attacking my joints. 2.5 years ago I started having issues with my memory. I could not remember simple things ie. I needed a bowl but could not remember what it was called so I would describe it...the round thing you put stuff in. I get confused when going to town can't remember where I was going or which way to get home. Short term memory is affected mostly some long term but can remember with help. 1 year ago started waking up with headaches, then my balance is off as well as my motorskills. I feel dizzy a lot. I have had 4 flare-ups of lesions of unknown orgin on the gentil area biopsies are not cancerous or herpes. The painful joints come and go in cycle, I get really fatigued. I have the desire to do projects but just can't do them. I was a very active person always doing something now I feel like a couch potato with no hope in sight. Thank you for listening. Comments appreciated.
Lost and frustrated.: I have not been diagnosed... - Behçet's UK
Lost and frustrated.
Hi Pearl, glad you've found the site. Are you in the UK and which doctors are looking after you? Main consultant for bids usually rheumatology. I have suffered with BD for 30 years and suffered with practically all the symptoms at one time or another although back then most docs didn't even know about BD and it took 12 years plus for my diagnosis. Hopefully you will get some answers soon Nd then the right treatments and meds although it is still a lot of trial and error!!
Do let us know how you get on and if you get BD diagnosis.
Take care
Billi
Sounds familiar... You are not alone! It takes a very long time to start healing from BD. Like Billi said, it is a lot of trial and error. One thing that I think made the biggest differences for me was sleep and dietary changes. Sleep as much as you can. You need it!
What is your diet like? What medications are you on? Colcrys decreases the body's ability to create inflammation, helps keep ulcers at bay as well. Speak to your doctor about it....because it does cause GI issues initially.
I personally saw the biggest change within 2 weeks once I went sugar free, carb free (including most fruits- only unripeish bananas and berries here and i had to work those in) yeast free and process food free. Meat and veggies. Good fats... the omega threes and sixes. I supplement with a multi strain probiotic and eat coconut pills (or coconut if available) as much as i can...helps with eyes and joints. Helped me tremendously with my stomach as well. Seriously, huge difference, i have energy now. My joints don't hurt and stomach issues are in the past now.
With BD, you can't really treat one symptom at a time (well you can but its so worthless...) you must treat the body as a whole. One must decrease the total inflammation overall. Watch your diet, increase sleep, and decrease stress.
Good luck honey- we are here for you!
Behcet's is such a horrible disease to have, it pulls you down and just as you think you may be coming back up something else hits you with a vengeance. Also what may help one persons symptom's may not do the same for another. I have had BD for about 40 years, that's when I now know I had my first symptom's. I have had many of the things that you have had plus depression. I try desperately not to have pills if it can be avoided , sometimes you just have to give in. Like the other's have said I have cut coffee from my diet and I have a very small amount of skimmed milk or soya as most things with full milk or skimmed give me diarrhoea big time. I eat organic food where possible, we grow our own vegetables and have fresh eggs daily, this certainly helps. I also take Manuka 10+ honey first thing in the morning I teaspoon in a small amount of boiled water. For me this really does help my joints with aches and pains. I also use Merc Sol 30 for my ulcers which helps me considerably and I always use Aloe Vera Forever Bright toothpaste which is natural, my ulcers have dropped from 25/30 which I had regularly to almost nothing. I drink lots of water, we are lucky that we are on a spring with no chemicals. My sleep pattern is terrible, some nights I don't go to bed until dawn but I have had this for so long now that I just go with the flow. I do sleep in the daytime if I am tired I listen to my body. When I am exhausted it effects my eyes and my memory, so sleep is very important. Stress is another factor that the more you stress over things the worse symptoms get. You just have to find what suits you. I make myself especially when I am having a bad day to go for a walk, even if it is just for 15 minutes, it helps blow the cobwebs away. You need to keep a diary of what you eat and drink and the effects that this has you may notice a pattern. I do hope that you will feel better soon, be positive if you can. All the best Biddy
Thank you all for the advice and encouragement. I try my best to eat organic when it is available. I do eat a lot of fruit (crave it). I do not eat processed food, fast food or fried foods this is not a new diet change I love to eat healthy stuff. As far as my meds there are none that I take for BD, Just ibuprofen, high blood pressure, pantoprozole for stomach. Most of the stress I have stems from my health it is so frustrating to not be Me anymore. My sleep pattern has changed in the last year also. I stay up till 3 or 4 in the morning sleep 4 or 5 hours back up and feeling lousey. I do have a appt pending with the Reuematolgist. I will try your suggestion and again thank you for your comments, greatly appreciated.
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Snakes alive
