Hi everyone, I like most of you suffered in silence for many years not giving doctors the whole story not realizing the big picture.

[Lorimin96]

I had symptoms since I was 12, it started with rash pimples on my legs, sensitive skin, couldn't touch cold, back of my leg and hand into arm. I always had mouth sores and developed genital sores at the age of 20. Embarissing, doctors had know idea, I have 3 children great pregnancy it was after birth my body went craz. When my son was 1 week I was in the hospital 5 days and the doctor said we know what's not wrong with you, you don't know what's wrong. My blood pressure was high, pulse was 38 had 20 pounds of fluid and a migraine that would go way. I have been mis diagnosed with many diseases never bechets, I got strep degenerate I was 29 that's when the inflammation in my elbows hand knees and ankels, mr rumator factor was 80 ( inflammation in your body) was told I have spondoarthritid, 10 years went by not telling my GP all my symptoms but if I wasn't having a flare felt ok, I gave up gluten best thing I ever did and started kickboxing and never felt better, if I'm having a flare like now I'm bloated achy no energy, haven't excersised. In 2 weeks. I feel like I have mono I sleep 13 hours and need more sleep. The migrains are controlled with imitrix, the inflammation is controlled with diclonific, I didn't even mention my stomic, very unpredictable when it happens there is no reason the pain is worse than labor, I'm in the bathroom for 2 hours ( embarissing) it passes as fast as it came. Doctor says IBM, thanks for listening, any suggestions?

[Katniss12]

Your story is too much like mine. After 17+ years, I was diagnosed this year based off my initial asking about it from doing so much research. I had a biopsy and then also positive for HLA B51, and also autoimm. marker ACL IGG. After being so ill and not figuring out why, I went gluten free about 3 years ago, and my body really calmed down. I have had some flares this year which finally lead to diagnosis, but I had a couple bouts of low dose prednisone for 2 weeks and off of it. Since my eyes are not affected right now (except for one bout of inflammation calmed by steroid drops) my doctor and I do not want to put me on all sorts of maintenance meds. since I have lived this long through the ups and downs while working, so I have learned to deal with my body without the drugs... for now at least. I do hope that I will be one that the disease starts to die off later in life. 37 years old now and had mouth sores and migraines since about 10-12 years old. The phantom stomach illness that feels like death, and I used to get high and low fevers too but not anymore, are crazy because then it just all goes away so quickly. I do believe it's just the illness. It probably is much like IBS, but caused by the BD. I have found cutting out dairy calms things too, or it bothers me much more with it. Take Care...

[Lorimin96 in reply to Katniss12]

Thanks for responding, it's nice to know there is others, I have been tested and have HLA-B27 never tested for B51, my GP says there is no test and no cure, kinda frustrating, my family always says go to the doctors my response now is which one, I need 5 different kinds of doctors I just want a positive diagnosis. I always felt like I should be on that show dr house. I gave up soy and dairy most the time but the hot flashes at times are bad, another thing is earlie menopause, I have had hot flashes since I was 20. The flares seem less as I get older diet and excersize is the secret, best wishes.

[Katniss12 in reply to Lorimin96]

Yes, it is hard to diagnose because there is no one specific test that can also rule out all the others conditions that mimic it. I have been to countless doctors and spent a lot of money. I took into my own hands this year. For all these years, I figured I was ANA negative Lupus as I will feel sick after being outside, especially in the sun. So the Autoimmune conditions share a lot in common. When I had the biopsy of an ulcer (which I called the Dermatologist and begged for the day it started), that's when things started going somewhere and also the Anticardiolipin IGG blood test being high positive. It is not specific, but is an indicator for certain conditions of autoimmune. It's estimated that maybe 20-30% of Behcets people have it. The biopsy said results would be consistent with Behcets; and I told them I thought it would. They couldn't believe it. Then finally my new Opthalmologist said with all the history, what more could they want... she officially diagnosed me then did the HLA B51 just to be final. We did not expect it to be positive, which would not change the diagnosis; but being positive concludes that we made the right diagnosis. This gene is only indicative in Behcets, but some people with the gene never experience the disease.

[Zebra in reply to Lorimin96]

Have you been investigated for lupus? Hlab27 is strongly associated with lupus and isn't with behcet's. Just a thought.

[Lorimin96 in reply to Zebra]

I think I've been tested for everything, I'm seeing a rheumatologist next month and will be tested for HLA-B51 and a patch test. The differences between bechets and lupus I'm clearly bechets.i just wish they had a positive test not just genetic markers. Thanks for responding.

[runninggirl08]

Hi I recently cut out gluten and dairy and soy ..I find the soy seems to aggravate my symptoms the most..have had bd for 30 years w a number of remissions. However have really seen a big difference since I really changed my diet. U might look at dropping soy or at least see how u feel after ingesting it. I also take a pro biotic...vitamin d..and b12. Much more energy. Good luck to u

[Lorimin96 in reply to runninggirl08]

Thanks for your suggestion, I'll try the probiotic, last year I felt great and lost weight multivitamin and probiotic was the difference, best wishes.

[Leslie33]

My BD started in my gi system and I used to go ovr 50x a day for ovr 2yrs!! With gi involvement in BD it mimics Crohns Disease.... sounds like u have gi involvement for sure.... my CellCept controls the inflammation in my gi.... good luck

[Lorimin96 in reply to Leslie33]

Thank you for your response, I'm new to group and so nice to not be alone with this disease anymore, my symptoms came at all different times in my life my gi happened with mouth and genital sores, different weeks, so unpredictable!! My GP says it's unlikely my GI and migraines are connected to bechets, I told her imatrix works great for my migrains she said it wouldn't work for bechets and said to take mylanta when my stomic bothered me, I told her I get no warning and It passes quickly the pain is unbearable and it's not IBS, If I can't make it to a bathroom I Controll. Adults don't poop there pants and it seems like everyone has IBS. Frustrating but I can go a year with no episode. Does it sound like bechets?

[Leslie33 in reply to Lorimin96]

Yes. Cld def be... headaches moat certainly go with BD... its one of our major symptoms... so debilitating!! Ive got Occipital Neuralgia caused by the Vasculitis which is what BD is...... u need to fins a dr who is familiar with Vasculitis/BD

[sian35 in reply to Lorimin96]

Hi

You could ask your GP to refer you to a centre of Excellence - they can really transform care and also support us emotianlly with this difficult illness.

Kind regards

[Lorimin96 in reply to sian35]

Thanks for responding, when I received the packet from bechets medical conference, I could beleave what I was reading, it was like someone took my life and wrote a story, I called my GP today and she referred me to a rheumatologist I boston. I think because it's rare in the USA, friends family even doctors don't beleave it's possible to have it, do u know where there are center for excellence?

[sian35 in reply to Lorimin96]

The centres of excellence I am referring to are in UK - but I think there are specialist centres/drs in US. I expect our American forum friends could help you out on this.

[Winning]

I feel like I'm reading my own story here in so many ways. The abdominal pain was so horrible I was seeing stars. That got worse and worse. Eventually, I went to a Endocrinologist that spends at least an hour with you at each visit. His questions are not the usual and when he diagnosed me with Bachet's ( already went blind in the right eye with uveitis, had constant mouth ulcers, no genital ulcers and achy joints all over, etc.) it was a relief. He put me on Zemplar (an active form of Vitamin D) and the GI problems resolved. However, the headaches were constant and almost as bad as the GI pains. I asked him if it was the Bachet's that caused my headaches. He said probably, prescribed 25 Hydroxy D (another form of Vit D) that took them away and all but resolved my mouth ulcers. That was such a relief, but I still have some other awful symptoms that do me in. I asked him about the vitamin D he explained I was not absorping certain things in my ileum and said he was following the pathway of the D and calcium. Then he said "the question is WHY do you have the Bachet's." I like the way he thinks. he doesn't say "there is no known cause" He says instead, "you have a glitch and we have to find it." We are all different and what works for me doesn't necessarily work for others, but maybe it's worth looking at. Best Wishes for you and Prayers and Love coming to you.