Hello All! I was told yesterday that my rheumatologist is 99% certain I have Behcert's

Its a long story but if you will bare with me I don't mind explaining it. My name is Tony, when i was 7 I started getting mouth ulcers, real bad the sizeof your thumb nail and would have batches of as many as 30 a time. I have had many stays in hospital over the years from them. I saw various specialists about them but never found out what caused them or a way to stop them.

Anyway I celebrate my 39th birthday next month so have suffered with these for 32 years. i gave up all hope of ever finding out what was going on.. Well last year I started getting pains in my knees and fingers so paid a visit to my occ health department in work. After many hospital visits I was told yesterday that its 99% certain I have behects. However , I now have to have an MRI on my brain due to the number of constant Migranes I get every time i get ulcers, on top of this I need a nerve response test as i now also have carpal tunnel in my left hand. this last year I have seemed to fall apart.

One thing I get though that I have not read anywhere else is sore skin. not ulcers or sores, but just sore to the touch like someone is dragging a razor up it!

I have been reading since yesterday trying to understand whats happening and going to happen to me. I'm finding all this quite hard as I'm a firefighter and am really hoping I can continue with my job.

I have not been prescribed medicines other than steroids yet as they want me to have the MRI first to ensure i don't have nuro behcerts.

Anyway guys thanks for listening

Tony

11 Replies

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  • Hi Tony and welcome to the site. I have suffered with BD for 30 years now and this site and it's great co patients have been a real help. We are a friendly bunch and here for you in times of pain or just a rant or better still good news!!!

    Sadly there is no test for BD and not enough knowledge. The disease seems to affect us all differently and we do tend to have to help ourselves with regards to symptoms, treatments, meds etc finding out as much info as possible to arm ourselves on visits to docs and hospitals. This is why the site is so good as we can compare and help each other in many many ways. You should go to Behcets.org.uk and you will find lots of info, advice about BD and help in lots of ways.

    Hope this helps.

    Hugs

    Billi

  • Hi Tony...welcome to our small but growing and friendly forum.

    Glad you have managed to get a diagnosis after such a long time of suffering. You will come to realise that this happens a lot to a lot of people here.

    I have systemic behcets and neurobehcets and the sore skin is something I get and like you say is razorblades stinging. My consultant says it is a nervous system problem, when the nerves are firing like crazy. The strange bit is that you cannot actually see anything on the skin that portrays the amount of pain it causes.

    At these times I use almond oil or some neutral body lotion mix with a few drops lavender or marjoram oil and massage that area. It will hurt a lot when you initially start to massage but then you will hopefully feel a relief and the oils are lovely and relaxing.

    Also have a warm bath [not too hot] with Epsom salts and a few drops of the same oil.....

    Don't use these remedies though if you have any sores or ulcers.

    Good luck with your MRI's etc and it sounds as though you are in good hands now with your Dr's.

    Keep in touch

    P.S a couple of hints on using the forum is you can post a question etc under a Private Setting which means only the Behects Group will be able to read and reply to it. You might want to use that a lot if you are posting some pretty personal info. I have given you a link to explain how that works

    support.healthunlocked.com/...

    Also above on the right hand side is a search bar where you can search through previous postings for anything you might like to research :)

  • Hi Tony, I am 43 and was diagnosed only last September.........(I am in Australia by the way, so even less known here) .As with almost everyone I was crook for quite a while before Diagnosis......it's a funny thing you say about the sore skin as I have only experienced it for the last couple of months and was starting to think it was my medication.....I was actually just signing in to post the question......you saved me so thanks for that! My brother was actually watching an episode of 24hrs in emergency a few months ago and he said that there was a young guy on there with behcets with skin so sore he was in agony and at the time I couldn't understand it.........I didn't say anything to my brother at the time but I rang him a few weeks ago and told him that I can now.....

    I had an MRI last Saturday but have not seen my rheumatologist as yet to see what the story is......I sincerely wish you all the best with yours!!

    It all takes a while to sink in but you will work your way through it......just be observant of how you fell and don't try to do too much!

    All the best

    Keith

  • Hi Keith. Thanks for your reply and gd luck with your results

  • Hi there! I am recently diagnosed after about 17 years, but instances that also go back to childhood. This past flare that let me to try and push forward to find out what's happening, I had the sore skin and nerves firing. Of course at first the doctors look at you and don't see anything and say you probably are stressed out and have anxiety. Now with a diagnosis I hope to not hear that for the future years. I did have an EMG though and the very bad bout I had for about a week of very painful skin and "nerve firing," did not leave anything for the EMG to pickup on the leg and arm tested.

  • Thanks for all your replies and support. I thought that it was just me with sore skin. Everyone used to look at me very strangely when I spoke about it.

    Tony

  • Hi Tony

    Its good to read up and be fully informed but don't fret about the 'what might happen to me'. Its a strange illness and not everyone suffers with the same stuff or to the same degree. I work in the prison service and have never taken a day off yet related to BD ( though have struggled through manytimes!!) . Diet, exercise, stopping when your;e tired, decent meds and pain relief all help.Im due for a brain scan shortly too due to the amount of migraines Im getting but if its related to BD then thats that, need to be positive. Love your Fire dragon name by the way. Regards Jo x

  • Hi Jo thanks for your reply. Yeah Im not fretting took me by shock at first but im of the opinion I just get on with life as well as I can while I can. I get plenty of exercise Im in gym daily just be nice to get on top of it and move forward. Its funny the firedragon came about as i used to breed dragons when younger then i joined the fire service and fire and dragon goes well cause im welsh, so it just sort of stuck lol which prison you work at?

  • Hi I work in 7 prisons in the north east, responsible for healthcare ( don't laugh!!) so thats worse as I always seem to self diagnose xx

  • Il try not to laugh then lol.

  • That sore feeling you are talking about sure sounds like my grandmother's nerve pain. She has fibromyalgia, and I know that though certain doctors scoff at the diagnosis, I can tell you the pain is quite real. She literally jumps with pain when someone lightly touches her feet, poor thing.

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