Undergoing investigation after 10 years... Just wanting to know if anyone has similar symptoms to mine.

[Jenny07]

Hi all, it's great reading this forum listening to other people's experiences- finally people who understand! It all started 10 years ago when I had a circular lesions appear on various places of the body. They took a biopsy which led me to the diagnosis of discoid eczema- I soon found out that was absolute rubbish. Unfortunately soon after I started having seizures and was diagnosed with epilepsy. So I commenced treatment on lamotrigine which has finally stopped the seizures. After this I have had reoccurring outbreaks involving a skin rash including ulcers in my mouth, genitals, identical areas on my hand and up my nose. I get severe pain behind my eyes and infront which ultimately makes it extremely difficult to even look at the light let alone see straight. This then follows with a severe headache, vomiting and generally feeling very poorly to the point of being in bed all week and being supported to go to the toilet and have a bath!. I have just recovered from a very recent outbreak which has now progressed into deep aching in my joints particularly knees, ankles and hips as well as the usual suspect symptoms.

The doctors tried to tell me that none of it was linked, however I have these outbreaks at least twice a year with all of these symptoms which have gradually got worse over the years. They also happen more or less the same time every year is this common for Behçet's? I was referred to my neurologist straight away who said within 2 minutes he is sure it's Behçet's syndrome. So my next outbreak I had a puncture biopsy to look for Behçet's which came back negative! I had another 2 years of these flare ups till I paid private to see a dermatologist. She made me go for my forth sexual health screening to rule out herpes because of the genital ulcers- AGAIN negative! Everybody has ignored the fact that all the symptoms in my case come together and various people are only focussing on one thing at a time. I am absolutely sick of this now and if it is Behçet's I would actually be happy to get a diagnosis so I can start some treatment. It really is taking over my life and because of many people's little understanding of it, it's very hard to explain how you feel poorly and why it's happening. I have now been referred to a dermatologist who refused to see me because she said I need a rheumatology appointment first due to being systemically unwell as well as the skin rash.

I am looking for information on how you all got diagnosed? Also if any of you experience similar symptoms to me how do you suppress them from being so severe? I am really grateful to anyone who reads my post and responds. Sorry it's so long, just for my first time posting I needed to give the full detail of what's been going on. Thank you. Jenny xx

[Hidden]

Hi Jenny,

Good to hear you are finally having investigations done after 10 years of horrible symptoms. With Behcets it is hard to give exact information on how everyone got a diagnosis, but I can give you my experience.

Mine all started with lots of problems with my gut, mouth and anal ulcers. At first I was diagnosed with Crohns. I then started getting more and more mouth ulcers and the occasional ulcer round my anus and lactose bits, ulcers on gums were so sore I could only eat soft foods, if I managed anything at all. I lost a significant amount of weight. Dropped from around 10st down to 8 1/2st. Then I got headaches/migraines that would last for days on end. I am now having big problems with my joints.

I was at one point going what felt like round the departments at the hospital.

My G.P was the person who linked my symptoms together and then referred me to the team I am now looked after at a local hospital in Oxford. A consultant there confirmed her diagnosis and then as he put it labelled me with BD.

That's pretty much my story, it did take about 4 to 5 years to get diagnosed, and I am now 3 years down the line fighting to get the correct treatment to keep my BD under control.

Hugs Clare x x

[OorWullie in reply to Hidden]

Hi Clare,

Can I ask what team in Oxford it is who looks after you ? I am under a dermatologist in Oxford and have been seeing her for ten years or so now. Have you had the b51 test and if so has it came back positive ? When speaking to my consultant she tells me that she is 100% sure that I have BD however she says she does not want to confirm it on paper because if she does then the amount of funding will get cut, she says the more undiagnosed cases there are on her books the better as this is the only way that the department will get funding. I am the same as yourself and felt like I was visiting every department just to be referred back to dermatology. Do you have any other secondary illnesses like fibromyalgia etc ? My symptoms all started with lesions all over my breast and legs, also the ulcers in my mouth and down below, I was so embarrassed to go to the GP but I was so relieved when I did, the only down side is all GPs don't know enough about it so it is all the waiting on hospital appointments until you see your consultant again because your GP does not know what to do with you. I hope you don't think I am being too nosey but it will be interesting if we are under the same team. Many thanks and I do hope you will reply. Best wishes. Oorwullie.

[Hidden in reply to OorWullie]

Hi Oorwullie, I am looked after by 2 teams at the Nuffield Orthopaedic Centre. Dr Joel David's and Prof Luqumani's teams. They are both Rheumy's but Prof Luqumani specialises more in Vasculitis.

I am waiting to be seen by a Neurologyst in June at the JR hospital. I suffer with mouth ulcers, ulcers down below, migraines, joint pain, and gastro problems. Most recently my hips and back have been causing me lots of pain. I can hardly walk and am having to use crutches to keep mobile. Pain is so bad I am taking modified release morphine and topping up with Oramorph. Apart from when I have been in hospital I have never had to take morphine at home before.

I think this is the most scared I have been since I first started getting ill with BD.

My mouth ulcers have flared back up and my tongue feels too big for my mouth. My tummy has been bad too. My wrists, knees and achillies really hurt as well, over the weekend I seem to have gone further backwards again.

Anyway I hope I have helped with so info. Ask away if you want to know anything else.

To be honest I am set on going to the London CofE now though.

Best wishes, Clare x

[CrystalAngel1]

Hello Jenny. Welcome to the site. Please don't apologise for a long post - I'm glad you found this site and it sounds like you could do with the support. You don' t say where about's you are? Are you in the UK? If you are, then I strongly suggest you get your GP (or any other healthcare professional or dentist) to refer you to one of the 3 UK Centre's of Excellence. It is free to them to refer you - the service is centrally funded and so they can not refuse on those grounds. It does sound very much like you have many features of Behcet's Disease but the condition is very complex and there are lots of other auto inflammatory / autoimmune conditions that have similar symptoms. The experts at the COE can make the diagnosis and then offer you the correct treatment. The problem is, until you get that diagnosis and on the right treatment path, then it might be difficult to fully get your symptoms under control. I personally don't have any neurological features of Behcet's (except for very severe migraines) but my sister (who also is on this forum) does and I have seen how badly effected she is. We have both had a very long journey from the onset of our symptoms to diagnosis. I was 12 when I had my first outbreak of mouth ulcers and over several years I developed other symptoms (gut problems, genital and urethral ulcers, migraines, fatigue, arthritis, skin lesions) but I am now 31 and have only been formally diagnosed a couple of years. Even after diagnosis, I was managed by a rheumatologist at a large teaching hospital who told me he was experienced in Behcet's and I stuck with him. I got worse and then I found out about the London COE and transferred there at the end of last year. I can honestly say they have been amazing. I have been really poorly lately but London have given a real health MOT and sorted out my meds and I am gradually improving. They have a multidisciplinary team including ophthalmologist, neurologist, immunologist, rheumatologist, oral health, specialist nurses and a psychologist for support too. I really hope that you can get to one of these centres because it is worth it for the diagnosis and to get on the right treatment pathway. I know when you are as poorly as you are, the thought of travelling to one of these can be really daunting but they have patient accommodation right next to the hospital and you can get help with travel costs too. I really can sympathise with you about seeing lots of different people and nobody appreciating or linking the fact that the different problems occur together. The complication with Behcet's is that sometimes all your symptoms don't always come at once - even though they are all part of Behcet's! There are lots of people on this forum with similar experiences. One thing I did find helpful was to take pictures of anything I could - especially skin lesions and ulcers because you could guarantee that having waited 9 months for an appointment and suffered for many months of those - there wouldn't be an ulcer in sight on the one day you wanted there to be! When I went to London they also found this helpful. Good luck and keep us posted. Please feel free to ask me anything else if you would like - I really do feel for you and where you are at with your Behcet's journey and hope you get a formal diagnosis and treatment plan soon. X

[Dan_NY]

Hi Jenny. One thing puzzles me. What test did you take that came back Negative for Behcets? To my knowledge ( I am not a doctor FYI), there is no "one test" to say you have or do not have. Its more a conclusion based on symptoms, and based on lack of evidence for anything else. Maybe you can share what test you mean since I am not familiar with it? thank you.

[OorWullie in reply to Dan_NY]

Hi Dan_NY

I have just been reading your post that you sent to Jenny regarding the tests that came back negative. I am not an expert but there is the B51 blood test that gives them a clearer indication, I think this may be the test that Jenny is talking about. It is called HLA B51. I might be wrong but I know I had this test done and mine came back positive, if you read up about it, it will confirm that this test is used to help diagnose Behcets. Best Wishes, Oorwullie.