Yet to be diagnosed, but symptoms could be Behcet's? PLEASE HELP (if possible)!

Hi Everyone,

I would really appreciate it, if someone could maybe shed some light on my situation. As I am very desperate for help, and I am not getting the help I need from various Doctors and Consultants.

I am a 28 year old Male from Wales, UK. I am physically fit, who follows a healthy diet/exercise regime, and have always been in good health (with the exception of the last 2 years):

Since May 2015 I have had random symptoms flare up; some symptoms more frequent than others.

Just some additional info. To date, I’ve seen: two Dermatologist Consultants, an Infectious Disease Consultant, and an Immunologist Consultant. All under my private healthcare insurance.

I have no allergies, as confirmed by tests.

Here is my symptom timeline:

- Since May 2015. Testicular swelling. Painful lumps on both testicles. Where pain will randomly flare up, and then go away. I’ve had an ultra sound, and they were confirmed non-dangerous and normal.

- Since June 2015. Painful sores on the Penis shaft. These took a week or so to clear up from the initial outbreak, and then went away for 6 months. However, they returned with a vengeance, and have flared up every 2 weeks on average since!!!!!! This obviously looked and felt like Herpes. However, my swabs and blood tests come back NEGATIVE with no signs of the virus. Depressing, to say the least!

- Since June 2016. The skin around my eyes randomly swelling up and getting infected. As if I have had trauma to the area. Eventually heals within a week or so. To date, it has re-occurred around 4 times.

- Since July 2016. Random red lumps (like cysts) on my upper torso. Mainly on the left arm, chest and upper back. These take a good 3-4 weeks to subside and fade. However they leave bad scarring.

- Random acne like spots, that are painful, red, and take a good 4 weeks to heal. No discharge comes out of these spots (like a normal spot would). These occur once or twice per month, and leave bad scarring.

- Hive reactions to my left arm, that subside and go away within 12 hours. These occur probably twice per week.

- Random skin infections behind my ears, that can’t be explained. They have occurred a total of 3 times to date.

- Random nose bleeds, that eventually stopped in September 2016 (could have been stress related maybe).

I know I may sound like a hypochondriac. But surely this is not right, and something has to be up with my body.

Judging on the pattern and type of symptoms, I have suspected Behcet’s – based on my own extensive research. When I mention it to medical staff, they tell me it’s not and dismiss me. Their rationale being, it’s rare and you need to have 'mouth ulcers' to qualify for a Behcet’s diagnosis.

Any help would be really appreciated. It’s been what I can only describe as……. the worst 2 years of my life.

Thanks in advance.

Kind Regards,

Joe

21 Replies

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  • Hi Joe,

    The cardinal sign of Behcets is mouth ulcers, it's very difficult to get a diagnosis without them. Some Behcets experts think that Behcets never occurs without them.

    If you have private medical insurance I would try for an appt with Prof Rob Moots in Liverpool. He heads up the Behcets Centre of Excellence there and I am sure he sees private patients as well.

    To get a diagnosis you need to see the most expert Consultant you can.

    finder.bupa.co.uk/Consultan...

  • Hi Joe. I have had Behcet's for 42 years with horrendous ulcers everywhere mouth 25/30 at a time. I was only diagnosed 8 years ago with most of the symptoms for Behcet's so don't give up. Try washing with a organic coconut wash when you shower this will help your skin same with hair products as I found really irritates my skin ulcers but since using a natural product it has reduced considerably the amount that I get. Also keep a diary of what you eat and symptoms. Also take pictures of any lumps bumps that you have as really helpful to show doctors as symptoms come and go really quickly. All the best Biddy

  • I was diagnosed with Behcets exactly 12 months ago. I am cross that your question regarding Behcets has been dismissed. It has nothing to do with ethnicity , but genetics. You mention you have private insurance. I did have, but opted to stick with the NHS mainly because I felt there was more knowledge within regarding this condition. I suggest you see an ophthalmologist and rheumatologist as soon as possible. Birmingham has a Behcets centre of excellence. I urge you to so this quickly because of your eye involvement. I have been on a drug called Azathioprine and it has worked. Behcets is an autoimmune disease. I too had genital ulcers and had to do the rounds of the local sexual health clinic - that was an education! I found that anti-inflammatories caused mine, stopped taking anything with anti-inflammatory properties, including foods, and I have not had a problem since. This was long before a final diagnosis. Good luck, let us all know how you get on. Be aware you are going to have to push your GP to refer you. Don't take no for an answer, and please do this immediately. The sooner you get onto medication the better. You can then get on with your life. x

  • You are not a hypochondriac !!!!

    get yourself referred to a decent rheumatologist, the Birmingham behcets centre of excellence are fantastic.

    I too had private health insurance but I feel that the rheumatology team at City Hospital Birmingham which includes the centre of excellence are the most supportive, thorough group of doctors I have encountered.

    The ear infections, acne cysts and skin issues around the eyes are exactly what I suffered, i am female but I do know that behcets can attack testicals.

    There is a sister condition to behcets called MAGIC syndrome which could also explain your symptoms.

    Please do not give up, it usually takes many years of strange symptoms before any of us got diagnosed, it took me 5 years.

    Good luck x

  • Unfortunately patients outside England have no right of referral to a Centre of Excellence.

  • You have explained all of my symptoms perfectly. I'm now 37 ans diagnosed at 18. Symptoms also can change over time... I get less genital and oral ulcers and now I get hot flashes, fever, joint pain, migraines, acne-like lesions, extreme fatigue, stiff neck, etc... list goes on and on. I have discovered the African soap helped my lesions A LOT... Please consider trying it. Perhaps going to a different doctor would help? If the one you have now isn't listening, stop wasting your time. I think besides the symptoms and quality of life at times, finding a doctor that listens is extremely difficult and frustating. Take care and hope things get much easier for you.

  • Thanks everyone for your prompt responses, I really appreciate it.

    I have always kept a photo log of my symptoms and have shown the various Doctors and Specialists, however still no diagnosis or admittance that it could potentially be Behcet's (yet they can't give me an alternative diagnosis).

    I'm in the process of trying to get an appointment with the Birmingham Centre of Excellence Hospital, but it's being proven difficult; as my GP surgery don't think I should have the NHS funding to visit them (bit harsh, I know).

    Looks like I'm going to have to go with Keyes recommendation (thanks for the info Keyes) and take a trip to Liverpool, to see Prof Rob Moots via my private health insurance.

    I'll let everyone know how I get on (if I manage to get somewhere).

    Take care everyone, and thanks again.

    Joe

  • Keep a food diary.

  • Hello joe,

    I sympathise with you completely. I myself have suffered similar symptoms but always have suffered ulcers oral and recently below, I am 35 year old male fitter than most I have been suffering all the symptoms you mentioned and some my latest is severe burning red face only indoors (strange) I also haven't had a diagnoses but I am at last seeing a rheumatologist for the first time this Friday...

    I also have done my own research and have come to the conclusion that most of these symptoms cross reference to many different types of inflammatory autoimmune diseases... I honestly feel it is impossible to rule out one or the other... I would imagine most of these name tags for diseases will be treated with similar meds...

    I realise I'm not being of much help here I just thought I'd let you know your not alone as it is really difficult to accept when once healthy with next to no problems then bang!!! One symptom after the other....

    I hope it all blows over for you and me both if I do get any helpful tips in the future I will be in touch.

    All the best👍

  • How did the Rheuamatologist appointment go mate? (hopefully it was worthwhile)

  • Hi Joe, actually realy good I didn't expect to much as I had seen many specialists in the past none of which gave me any reason to positive...

    Basically she listened to my story and checked my history and from that she came to the conclusion it is likely to be bechets...

    She took a lot of blood to test to rule out anything else like lupus etc before giving me the diagnosis, I have now started on the colchicine this past week not seeng any big change but my ulcers are not as intense for now, she is seeing me back next month probably to diagnose me with bechets...

    How are you getting on any closer to answers???

    All the best pal👍

  • Hi Hampo81,

    Glad you're getting somewhere. I do hope you get some definitive answers soon. I'm still having barriers put in place by my usual GPs (with regards to a referral). However, I've managed to book a private consultation with a Rheumatologist on the 10th July (fortunately).

    I ran into a bit of a health incident 2 weeks ago. I started to feel dizzy with kidney pain and ended up collapsing. I went to A and E to find that my potassium levels had dropped and my creatinine levels were really high. The doctors couldn't explain why that happened, but put me on a drip and my potassium levels returned normal after a few hours. The kidney pain is very intermittent and have been going on for quite a while now. My urine and bloods all came back normal. I have an ultra sound scan booked for this Friday (through private health care).

    It just feels like it's a constant battle, whenever I see any kind of doctor they automatically assume I take anabolic steroids or any other muscle enhancing supplements/drugs. I can't really blame them for asking, as I am 99kg of muscle from years of natural training. It's come to a point where I ask them to test me for any drugs, because it seems like they don't believe me. As if I would keep that information from them if I was! I’m desperate for answers.

    I just feel my fitness and strength is battling against whatever is happening to me. If I was unfit and older, I'd probably be a lot worse off!

    Kind Regards,

    Joe

  • Hi joe, sounds like your going through quite a time of it.

    Hopefully you're roomy will be much more help as GP'S never did anything for me over the years either...

    One thing I will say is you are bang on with the fitness... I have always been active until about 5 years or so ago when I moved to a new town and job... I stopped boxing and stoped playing football... it seems that's when all my symptoms began, I'm not saying that's why but I thought to myself just before Christmas that this condition had been getting the better of me for to long and had me on a real downer it was time I started fighting back... I started the autoimmune diet (which I didn't think helped me) but started running a lot!!!

    I got to the point I was running 20/26 miles per week, I'm now down to 10/12 but that for me hasn't got rid of my symptoms but has definitely helped with my mental state... any time I feel a flare now I just go out and try run it off, in my mind I think if my immune system is over active and out of control with nothing to fight but my good tissues then I will give it something to fight!!! So I run and fucking run until I can't run anymore (forest Gump) lol

    Anyway what I'm trying to say is exercise has helped with my over all health but most of all my state of mind... exercise really does release indorfins and is my biggest allie now...

    So keep doing your fitness thing big guy it must keep this shit down!!!👍👍👍

  • Hampo81 ,

    I couldn't agree with you any more. Exercise will always be a help when facing illness. Especialliy with mental well being. What would I do without the gym!

    Keep up the exercise. I hope things settle down for you soon mate. Maybe we can both look back a year down the line and finally have things under control and be 100% happy.

    Regards,

    Joe

  • Try switching GPs until you get one that listens, I had to use a private one a few times. I think the insistence on mouth ulcers can be a bit misleading, you may just not be going through that stage yet.

    I did not get diagnosed until I had eye involvement, yet had practically every other symptom, but the doctors tend to look at each symptom in isolation.

  • Hi Barry,

    The Doctor's have used that line on me a few times 'all my problems are individual'. Which I completelty disagree with, as I am a usual extremelty fit and healthy person.

    I've changed GPs once already (last August). Unforutantely, I may have to think about doing it again.

    Kind Regards,

    Joe

  • behcets.org.uk/information-... Hi JoeyB88 have a good look through our various Factsheets on Behcet's especially the "Overview" and perhaps take a copy with you to your GP if you are going to try to get a referral to a Behcet's centre of excellence. Best of luck in seeking the correct diagnosis.

  • Hi Joe,

    Like me

    Could be a Streptococcal infection in the pathogenesis of Behçet's disease.

    In the past did you have tonsillitis??

  • Hi Manuel,

    I've never had tonsillitis, although I have had a 1 or 2 throat infections over the past 5 years.

    Kind Regards,

    Joe

  • Ok, thanks,

    I think my problem is streptocus...

    that's because I've Bechet.

  • *UPDATE*

    Just to give an update on my current health situation........

    Well, as I've been complaining of weird pains on my left side (initially thought maybe kidney), I finally booked myself in for a ultra sound scan (yes, booked myself in, as my GP didn't think I needed one).

    So, it has been discovered that I have an enlarged spleen! my kidneys and liver are fine.

    I also saw a Rheumatologist at the beginning of the week - who suspects Behcet's (not definitive yet)! Although he is more concerned with my enlarged spleen right now (as well as I am).

    Therefore, I now have to see a Haematologist on the 25th of this month to investigate further. My Rheumatologist doesn't think the spleen relates to Behcet's, as this is not a typical symptom etc. I'm hoping it can be recovered, although I will prepare myself for the worst.

    I hope everybody is doing a lot better.

    Take Care,

    Joe

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