Suspected Behcet's

[daveholli]

Hi,

I haven't been diagnosed yet and have only just started on the path. Currently waiting on the sti test results. It was the doctor at the sexual health clinic that mentioned Behcets and of course I have been reading what I can about it since. I have the mouth and genital ulcers but not sure about the other typical symptoms. I get the occasional headache but not migraines. I did have a really bad headache last year and nothing seemed to touch it. I don't have any joint pain or swelling. The only skin conditions I have had are a rash on my arm that was like eczema and I have recently started to develop another one on my leg.

The mouth ulcers are the worst, I would say I have had mouth ulcers continuously since 2010. There might be a day or two without them but they soon flareup again. Had the usual blood tests and all was fine so they put it down to stress and left it at that. The genital ulcers appear every couple of weeks and are usually fairly mild, except the current batch which I have had for over a week. I usually just used sudocreme to treat them but the doctor at the clinic said to just bath them in salt water. They also appear on the head of my penis, which I understand is not common for Behcets.

The scary part for me is reading about the neurological side. My memory is very bad, I can't recall anything from my childhood, can't recall parts of my teens and twenties. Short term memory is also quite bad. I have been putting this down to not having a good childhood and getting older (47). The other factor is my father and uncles have all had strokes. One uncle a very bad stroke that has left him disabled, another with very minor ones that only came to light when they scanned him and my father has had 3 but recovered from them.

Sorry if I'm babbling a bit but I feel that this is the closest I have come to a reason for the mouth ulcers. I have always said it felt like my body was attacking me. Do my symptoms sound typical? I think the problem is that until you know about this you can put headaches joint pains etc down to other factors and not link it together. I will get my STI results in November and I'm expecting them to come back negative. Is it then best to go back to my GP to get a referral to the Birmingham center, or can the clinic doctor do it? Should I begin a diary of all my aches, pains and ulcers so I can present a history and with my bad memory?

Thanks for your time

Dave

[Anthony0912]

I read something from last years AGM and one of the specialists says that every case of behcets is different. Symptoms can be along the same lines but effectively we all have our own version of the illness, there's no hard and fast rules.

I emailed the CoE in Birmingham with photos of my mouth and head and they said to ask GP for referral , within 4 weeks I have my date to go in (December) so all in all, 10 weeks waiting which isn't bad considering you are seen by specialists who are dedicated to behcets.

I am too in limbo, hoping to have a definite diagnosis one way or the other.

[JollyHS]

Hello, I am also undiagnosed. I've been to visist the London COE but still need to go back for my 2nd appointment, they were very helpful and thorough. Definitely make a diary, they didn't ask me for one but you can offer it. I think it helps you anyway, you may start to see patterns. Lots of folks on here often say that a particular food can trigger symptoms so it may be worth making a food diary too. My flares seem to be triggered by stress, over exhertion, possibly too much sugar and hormonal changes (this last one probabaly wont apply to you) From what I can gather the illness is different for everyone and you can also have it in varying severity - If I have it I would say mine is a mild case. I have had the Ulcers for a period of about 4 years but then they stopped, red patches (lesions) on my legs which my GP thought was vasculitis, migraines, fatugue and a very bad memory. I've lost whole chunks of my long term, my short term used to be excellent but not any more. I am a very similar age to you and don't think we should be having such probelms at our age! There are other minor things as well such as sleep disterbance, leg ache, bit of dizzyness, occasional blurred vission with or proir to a migraine. I have also had problems with my gums which is a whole other story. Like you though no bad joint pain, I do have problems with I think my tendons in hips and shoulders occasionally and have had a frozen shoulder, but not the inflamation or pain that they associate with Behcets, I also don't have any rashes as such my only skin problems are the lesions on my legs which are almost like circular red raised bruises. I'm not so worried about the neurological side as I have lived with this for 7 years now and my memory has not got worse, if anything as I have taken theings easier it has got better. I think it will probabaly help you to hear from people who have been diagnosed (you never know I may not have it) but though I would write to say you are not alone.

[Zevas in reply to JollyHS]

The lesions on your lower leg sounds like erythema nodosom which is part of the criteria for bechets disease, when this happens you need complete rest, the frozen shoulder could be an inflammatory response to autoimmune definitely keep a diary and take pictures of your flare ups, a rheumatologist is who you need to see.

[JollyHS in reply to Zevas]

Thank you Zevas

[2106]

Hi I have had Behcet's symptoms for over 40 years. My main problem was ulcers had other things but they were the worst. I would suggest you keep a diary of everything you eat. With me i can eat and drink then suddenly I used to get a mouthful of ulcers. Alcohol, coffee, milk, crisps chocolate are a no no as these give me mouth ulcers and IBS symptoms as well. I use a natural toothpaste Aloe Vera Forever Bright and no mouthwash as this agrivates them. Since changing have had no ulcers. A probiotic every day helps balance things as well. With the genital ulcers see if you can get some Betnovate Cream from your doctors this will help. Try not to use anything in bath or shower which isn't natural. Coconut is very soothing and will help the skin. Tiredness is also something that effects a huge number of Behcet's sufferers. You must listen to your body if you need to rest rest. This will effect memory. Try not to fight things listen to what your body is telling you and work with it and hopefully things will get better. I read huge amounts of stuff about Behcet's but just scared myself senseless. Just concentrate of the symptoms you have and try and make those better. Not saying ignore everything else write it down and ask questions when you see a specialist. I feel the less chemicals you put into your body the better you feel. Fresh food without additives it's all trial and error. What works for one may not work for somebody else. All the best.

Ps had terrible bone pain very deficient in vitamin D now take supplements every other day to keep topped up may be worth looking into this as my memory seemed to improve a lot once my levels were higher May be coincidental but nothing to loose

[distanttree in reply to 2106]

Thank you for your post.

Very helpful.

[JollyHS]

Hello 2106, thanks for reply to DaveHolli's post (Hope it's okay to hijack the post DaveHolli but fingers crossed this may help both of us), I was interested to read what you have written about bone pain, I have aches in my legs that seem like it is in my bones, not terrible but certainly uncomfortable. I remember having this as a child and never knew what it was. I also have had Vit D deficiency and have had 3 courses of tablets. I was wondering - Do you associate the bone pain with the Vit D deficiency? I also can't use mouth wash as it's far too abrasive. You mentioned also that your mouth ulcers have stopped. I have found recently that both my mouth and genital ulcers have stopped. I was wondering if you get times when they both go away? I have had them for about 4 years and then last year they started to ease and then stopped. I have been ill for the last 7-8 years but only recently looked into the posibility of my having Behcets. It was suggested by the Gum clinic about 5 years ago when the ulcers first started but I dismissed it as I only had 2 of the main symptoms for diagnosis - fatigue and ulcers. However when I went to my doctor about the red marks on my legs and she suggested Vasculitis I looked it up and Behcets popped up again. Like DaveHolli, I don't know a lot about the illness.

[daveholli]

Thanks for the great replies, I can see that I have a long road ahead of me to find out one way or the other. On the toothpaste mentioned, it does contain Sodium Lauryl Sulfate, which apparently can be a trigger for mouth ulcers or so I have read from other sites.

I have started my diary so I hope that will help find some patterns.

[JollyHS in reply to daveholli]

I use sensodine pronamel which unless they have changed it doesn't have SLS's It works for me. Good luck on your journey. This is a very helpful site, glad you have found it.

[distanttree]

There seem to be two main triggers.

1 the conditions which cause lumps..inflammation.

2. The conditions which cause mouth shedding and the resulting shedding of skin.

When the two come together there is a flare

Coffee causes lumps in mouth leading to blisters.

Tea causes the mouth to shed skin in the mouth.

The foods can be divided into some which cause inflammation

And some which cause shedding of skin.

Then there are foods which do neither and promote healing.

Until we have some experiments where people are tested on foods in a controlled manner

There will be no scientific proof.

[daveholli]

Hi All,

Just a bit of an update. The STI tests all came back negative, which I knew they would. The doctor took some more blood to test for autoimmune disorders and said she would refer me to the COF in Birmingham. Just need the test results to come back and then continue on this road of discovery.

Wishing you all the best and stay strong.

[JollyHS]

Glad you are getting somewhere Daveholli. It may take a couple of months to get your COF appointment but it's worth it. Prepare yourself for the blood tests - my arm ran out of blood! :).

I've just been for my second visit which was so helpful. I'm now reserching anti-inflamatory recipes, now I have some answers I'm determined to do everything I can to help myself get better.

Good luck, hope you get more answers soon.

[katemontclair]

My daughter's pediatrician thinks my daughter has Behcet's and all the symptoms (mouth sores, genital sores, joint pain, fatigue and sometimes irritated red eyes) does indicate she does. We saw an allergist at the suggestion of the pediatrician who said her condition was not allergy related; we were referred to a rheumatologist but we just didn't want to go that route because we're didn't want to medicate since she's just 10. She's had very severe mouth and throat sores starting when she was age 7, some genital sores that started Nov-Dec 2015 and right knee pains starting spring of 2016. We went on a low gluten diet from age 8-9 and she no mouth sores. I thought she outgrew her condition but when she started eating gluten more regularly she had a major outbreak after 3-4 months of going off the low gluten diet. We're back on the low gluten diet and she's not had mouth ulcers for 8 mouths. About 3 weeks ago we went low dairy and almost no nuts to see if that would ease the joint pain and it has! She plays soccer so I also got her sole inserts for her cleat so that's probably helped with the right knee pain as well. But I'm convinced managing your diet by reducing or removing gluten, dairy, nuts and adding more veg and fruits will make a big difference. I was convinced to go low gluten after reading a ton of articles but recently came across this post that really made me make the push to go low dairy and nuts.drweil.com/health-wellness/...