Is this Bechet's.

[Jamdanaid]

2 years ago my dentist asked for me to be referred as she felt I might have Bechet's, because of awful mouth ulcers I have most of the time. A rhemo said I didn't as no inflammatory markers. And negative ana. I have the following though, chronic fatigue since my 20s, my joints flares up with very sudden pain and heat in either wrists ankles or knees. Either they are very painful and go quite quickly or not so painful but last longer, blood pressure that doesn't go down at night, epilepsy which had been controlled but following change of meds due to osteoporosis, I have been changed and is now not controlled, severe depression and anxiety, and am on sertraline which has helped, a persistent cough, sleep apnea, white patches on my face which are not severe. Have started getting cystitis but lab sample showed no bacteria but white blood cells and latest blood test showed raised inflammatory markers and test was taken when I had a joint flare up. Does anyone else have these symptoms. Don't know what to do. Also have memory problems which has caused me a lot of stress at work. So grateful for any replies. Thanks

[CharFin86]

I wouldn't like to confirm nor deny Behcets as the last thing you want is being treated incorrectly. My advice is to not stop fighting for a diagnosis. I was mis-disagnosed for nearly 2 years as having an STD. Although the treatment wasn't working the Doctors kept insisting that was the cause. It was only when I had physically pulled my hair out due to pain, nearly gone blind due to the ulcers and swelling in my eyes and was on the edge of taking my own life that I went to the doctors with my mum (i had no fight left and she is a very strong woman!) She refused to leave until I got referred to a specialist. The referred me to an Immunologist who diagnosed me within a couple of weeks.

I doubt I am alone in this story and there will be many others who have gone through the same or worse. I am not saying you will get like that but I feel if i had more fight at the start (and been a part of this support network) I wouldn't have been as bad.

Stay strong and positive, don't give up and fight for your right to proper treatment, regardless of whether it's BD or something else.

It's not easy but remember that you have support.

Best of luck and keep us posted

[Jamdanaid in reply to CharFin86]

Thank-you so much for your reply. That helps so much. I didn't even realise there was such a thing as an immunologist. Sounds like you've been through such a bad time. I just feel like such a hypochondriac! Always at the doctor's! Never had any proper answers about pain and inflammation in my joints etc.. now this possible intestinal cystitis is a new thing. I used to have cystitis really badly and know this is different because drinking clears it whereas nothing but antibiotics used to work. Take care

[rooser1 in reply to Jamdanaid]

I also had frequent utis and they tried to diagnose me with icc. Turns out I was sucrose intolerant- i was literally pissing out unmetabolized sugar and getting utis. Since going 100% sucrose free- I do not get utis anymore. I still to this day have weird issues- I do piss out rbc or Leukocytes every so often- (i have strips that I monitor for ketosis) and contribute it to the fact of inflammation. It’s literally there one pee session. Gone the next. But no pain and my labs are always good. So I’m not too pressed about it. Hope this helps.

[CharFin86 in reply to Jamdanaid]

I 100% know the feeling of being a hypochondriac. It's awful but that is how other people, with little to no understanding of Behcets have made you feel. Not necessarily intentionally, just a lack of knowledge or understanding but nonetheless it does or can stick with you. However, as difficult as it can be, you have to learn to let that go and it will be much better for you and will allow you to keep fighting!

Good luck with getting it all sorted

Char

[Jamdanaid in reply to CharFin86]

Thank-you. I suppose I just want some kind of diagnosis so I can understand what I'm dealing with and find out how to help myself.

[Ingridbockes123 in reply to Jamdanaid]

Hi

Yes the right diagnosis is the first step to proceed with treatment see

A Reumatologist would be the best.

And as some one already mentioned, keep a diary and pics between visits.

I see my Reumatologist every 3 to 6 month.

Take care

Ingrid

[rooser1]

Keep a journal and pictures of all symptoms. Along with medications and also log what’s going on in your life at the time? (Are you super busy, stressed, if so with what). Behcets doesn’t have a test to diagnose behcets. Its a sort of ruling out everything else. Colcrys can help with ulcers. But above all else-regardless of what autoimmune disease you have there’s three things that will benefit you anyways until you find a name. 1- drink water. A lot of it. Like 75-100 oz per day. Drink only water. 2. Sleep. Get all the sleep. Not lay on couch and watch a movie or play on phone- but actual sleep. It will heal you and you won’t be in pain if you’re sleeping anyways. Sleep as much as you can. 3- cut all sugar and processed foods. They are proven inflammatory. Eat only meat, veggies and fats. Don’t eat things from a box or package. Eat a fruit if you can tolerate it.

Doing the above will help regardless if it is BD or not. Please click on my profile for many other in-depth answers regarding diet and etc. remember to be your own advocate, keep doing research and say no if you feel they are wrong. We’ve all been there- you got this.

[Jamdanaid]

Hi there. Thank-you so much for your reply. It's great to have support. I take pictures sometimes but the journal is a great idea. I should keep one anyway for my seizures. I know stress and lack of sleep play a big part. I struggle with sleep a lot and sleep apnea doesn't help. I now take cherry extract at night and magnesium oil and that helps me to sleep and have some sleeping tablets if I'm exhausted. I drink loads of water and eat healthily but sugar is my huge downfall! I'll look in your profile and thanks for your encouragement

[UKADMIN Partner Behcet's Syndrome Society in reply to Jamdanaid]

Hi Jamdanaid, if you are in the UK, you may want to ask your GP for a referral to one of the Behcet's Centres of Excellence - look here: behcets.nhs.uk/homepage/ We also have lots of information and Factsheets on our website: behcets.org.uk Good luck in getting the right diagnosis. Best wishes.