Diagnosed last month

Hi all im a 35 year old irish woman with 2 gorgeous girls who are 8 and 5 and an amazing husband who is trying his best to understand this horrible disease. Im currently on colgout but im sad to say so far its not working at the moment i have a. Ulcer in my mouth and a horrible ulcer between my toes but these symptoms are mild for me. Ive had it for 10 years now. I get ulcers in my mouth gentials and this is the 2nd one between my toes. I also get chronic fatigue and ive carpel tunnel in both hands but my biggest worry of all is that my gorgeous little 5 year old girl is getting ulcers in her mouth and it makes me feel sick to the pitt of my stomach to think ive passed this awful disease on to her. Most days i try to stay postive but today im having a bad day probably due to the fact in my job im on my feet most of the day and it doesnt help when u have a large aggressive ulcer between ur toes. Im also questioning how i got it im very pale white and irish and from talking to my mum (my dad passed away suddenly 9 years ago from a brain annerysum ) we have no family ties to turkey or the silk road so i guess im unlucky i know there is people out there dealing with alot worse and i shud count my lucky stars. Wud love some feedback so glad i found this group 😙

10 Replies

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  • Meant to say im new here just joined this eve

  • Hi so sorry to hear you are down in the dumps we all have days weeks that are like that but things do get better really. I can only tell you what I do as we all have different symptoms. Firstly I keep a diary of what I eat how I feel because I find that I can eat something and have problems a few days after. I can't drink coffee, milk, eat chocolate and various other things too long to list. I never eat the same thing on two consecutive days. Wine I drink very rarely. I never put soap on my skin as it irritates and can cause ulcers. I use coconut as this helps and also natural organic shampoo as anything with chemicals affects skin. Washing clothes all natural products. I eat organic food and grow a lot of our own, drink bottled water and we are lucky our water is from a spring so no chemicals. I take a probiotic every day as this helps the bacteria be balanced in your gut. I use a natural toothpaste Forever bright with Aloe Vera. I change toothpaste every 6 months so my mouth doesn't get used to it. I take homeopathy tablets for my ulcers Merc Sol 30 put 2 tablets in cap and put in mouth, do not touch with hands do this every 4 hours until pain stops. Once they start feeling better reduce to 1 every 4 hours then stop. If mouth starts feeling sore then start again. Can get these from health shop or on line. Mouth and genital ulcers were horrendous my main symptoms. Also no side effects if they don't work no harm. I do have cream for genital ulcers and any ulcers on my body which really does help if I have a serious flare this is Trimovate Cream this is great only use when absolutely necesssry also have instillagel which is a local pain killer also good. Would avoid mouth washes. Try a natural toothpaste for you daughter she may not have Behcet's but just be sensitive to things. I would also take pictures of ulcers/rashes to show doctor as things come and go so quickly. They said that I had carpel tunnel syndrome but I didn't had injections then had acupuncture and it disappeared. I also had terrible bone pain hands, feet, back, leg was aweful. Had a Vitamin D test and was very deficient so am on tablets and my bone pain has gone. I do get joint pain but this is inflammation so I take manuka honey 10+ or 15+ depending how bad. I put a spoonful in boiled water and drink once a day this helps. I have had steroids when things have got really bad but it was at a time when stress levels went through the roof. I had my first symptoms when I was 14 , 42 years ago. I hope this helps even a little but I would also suggest that if your body tells you to sleep then try as I have found over the years your body know best and what we have to do is listen to it. All the best Biddy

  • Hi Steph

    I'm pale white Irish and only on this site about 2 weeks. I'm 55 years old and was diagnosed when I was 41. At first I was happy to have a diagnosis as then I had a name for my symptoms and I tried a lot of alternative herbal medicines and still do. I have had periods of a few months of not feeling so bad. I too try to watch my diet and have found chocolate, orange and pork are to be avoided. There's no easy solution and for the last couple of months I have been very badly affected with it but I won't bore you with the details, it's a lonely disease and unfortunately I too am feeling sorry for myself, although I know I should not be. Don't give up and keep searching for solutions and that is what I will do also. I hope your little girl is just little bit run down and feels better soon as my own children got ulcers quite often but thankfully have not developed Behcets. I hope you feel stronger and better soon.

  • Keeping a food diary may be helpful.

    Worry will be part of the mix.

    Avoid chocolate concentrated orange juice. For the little one.

    Keep a food diary.

    Don't give up it could get better, we all get days when we are worn by it.

    Put big exploration hat on and do food research .

  • Hi and welcome. I have suffered with Behcets fit 32 years now and believe me there has been many improvements. More doctors know of the disease, more research is happening all over the world, diagnosis is much better and meds and treatments. There is life with BD, I went on to have two children, divorce, remarry and work at least part time. It's important that you accept you have the disease, stay strong and positive. When you have a flare big or small you need to rest, let your children and husband help you and don't feel guilty or anxious. When you are better don't rush around doing everything, one step at a time and learn to designate. I'm not saying it's easy but it is possible. Take the meds and try them for a month or so if they are not working or too many side effects ask for something different. Also keep a diary and photos of any ulcers or rashes etc to take with you to any appointments, especially for your daughter. Also it can be intimidating with a doctor or consultant so try to have your husband, family member or friend with you. Don't get down try to look forward there have been so many improvements over the years. If you have any questions please don't hesitate to message me privately if you wish. I hope this helps.

    Billi

  • Don't be so hard on yourself! You know my dad is Orcadian/English and my mum is Filipino, but I am the only one who has Behcet's. But I did a genetic experiment with the University of Michigan and you'll be surprised to see the building blocks of your DNA! I've got a small chunk from Turkey and that general area on one of my chromosomes, and God only knows what enviromental factor triggered the gene activation (personally I really think our generation really needs to take a serious look at how much pollution we are putting into the Earth and why we work ourselves to death). But I also have 5 year old and 3 year old boys and of course I worry too! But there's no point in worrying too much about what you have little control over. And tell your doctor your colgout isn't working for you! Best of luck and slainte mhath!

  • Hi steph. Sorry to hear your having trouble. Im also from ireland in belfast. That turkey silk route has nothing to do with me either and no family history of anything of this nature. Im 40yrs old and have struggled with behcets for over 15yrs. Theres very few people have this in the whole country. My specialists in the royal in belfast are brilliant tho theres very little know about it. Stay positive!!!

  • Hi Steph, I am also an Irish girl who was diagnosed with BD about 12 years ago. I suffered for around 6-7 years with chronic mouth ulcers vaginal ulcers and ulcers between my toes also. I was hospitalised for 5 weeks as was so sick and they eventually diagnosed me. I was started on 0.05 mg of Colchicine twice daily and 50mg of immuran twice daily. Within 2 weeks my symptoms started to calm down and I am mostly under control now except for the odd flare up. I have no family from the silk route neither so have no idea how I got these neither. My daughter has Lupus and although they say they are not genetic they most certainly are. I really hope your daughter is ok. Maybe ask your Gp or specialist to start you on immuran hopefully that helps. I niw luve in Australia but am from Limerick and there is an immuniologist that works out of croom hospital that is an expert on this horrible disease. Take care Steph and I really hope things improve for you 😊

  • Hi

    I'm also Irish and I am always pale and washed out I to have Bechets and have and is suffering the same as you but because it was recognised as the old Silk Road disease you can develop Bechets from inflammatory diseases such as glandular fever psoriasis etc as a child or teenager any inflammatory disease suffered as a child can instigate Betchets Hun if you tested positive for the HLA B51 gene then there's a possibility that your children may develop it but it is very rare indeed for it to be passed down the genetic line so I've been informed at the Bechets Centre of Excellence in Liverpool xx

  • I think that whole Silk Road thing is how it was previously understood. There's plenty of suffers who aren't descendants of there.

    My mum has Behcets, I have it and my niece got diagnosed last month. Get your daughter on the path to diagnosis early and they can treat it so she doesn't have to suffer as you have x

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