does very Behcets patient have a specialist??

Iv been having a nosy at blogs and questions etc, and the one thing I keep coming back to is that not one of us has a clue to the extent of the disease we all have...

Although GPs try.... lets be honest anyone with behcets has scrawled the internet within a few months of possible diagnosis and probably knows more than any 'normal' GP!!!

What we need (behcets patients) is a specialist.. to tell us that we are doing ok, and if we are not how we can improve our quality of life,, because this disease isnt quite curable yet!!! and its all about how to improve our lives to live with this disease.. and manage the pain and the 'flare ups'

I honestly cant imagine how different my life would be if it were not for my specialist, who is there to make my life easier and to cope with the 'sometimes' every day struggle...from using a steroid inhaler like bonjella, to using clochicine that is not for gout.. and especially an std antibiotic as a mouth rinse!!! he is an amazing man...and not scared to experiment on me!!!

EVERY SINGLE BEHCHETS patient should have a specialist!!!!!!!!

dawn x

11 Replies

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  • I don't think it's a matter of not having a specialist, Dawn, I think it's how much that specialist understands about the disease and, in fact, what speciality s/he actually is.

    We have a disease that effects all of our organs and so, depending on what we present with, we will see different specialists. I know Les in Australia was seen (I don't know if she still is) by a dermatologist. My first specialist was a bladder surgeon because I presented with urethral ulcers - then I was referred to a 'rheumatologist with an interest in BD.'

    Because there are only an estimated 1,000 of us in the UK, Behcet's specialists aren't the most common docs in the hospitals or universities.

    The upshot is that the quality of the care we receive as a group is variable. I'm particularly lucky with my GP, who works alongside me rather than experiments on me. I know exactly what you meant by that phrase but if you look at it in the cold light of day, it's a pretty scary phrase to use!

    My BD was picked up because my GP vaguely remembered a study day and because I thought the joint pain I experienced alongside my urethral pain might be significant. We learn together and he's not afraid to say 'I don't know, let's find out.'

    But my dearest wish is to go along every three months to see somebody who knows this disease inside out and back to front, who can tell me that, yes, those night sweats are one of your Behcet's symptoms and say it with absolute confidence. Sadly, for most of us at least, that is not going to happen. I suppose, in a way, we are pioneers!

  • Im a very lucky girl...in respect to my specialist, who is indeed a specialist of behchets.. altho having said that I have moved about the past few years and each GP i go to I have to explain my disease to them and why I am prescribed the medication I am on, and even the pharmacist, who if new, will always ask me where my gout is!!!!

    I was diagnosed at the gum clinic of all places!!!! where I was in a complete state of shock at being told I had herpes...thats maybe why I have never really went through a GP..

    I am happy to be 'experimented' on if it means that I can be pain free and ulcer free.. even if it is for a few short weeks at a time.. and if I can possibly help others with talking about the medication I am given then I am more than happy to do this...it is only with being on here that Iv found out about tea tree oil...(which is very nice) my mouth feels so fresh after brushing my teeth!!!

    Iv also been reading about a non addictive medicine to help with sleep...which I, like many people suffer with..Any kind of medication that is used outside the parameters of its original intent would be (I think) classed as experimental.. would it not??

    Have you heard about using hydrocortisone as a healer to ulsers down below?? because I only get genital ulsers 2-3 times a year I have not tried this, but my specialist has recomended it for short term use to speed up the recovery time??

    Thankyou so much for your input...p.s I get night sweats too!!!!

  • I had been ill for over 20 years before I was diagnosed with Behcets and in that time I had to become a Specialist in myself.

    In the beginning I had been diagnosed with Chronic Fatigue Syndrome or Fibromyalgia - no-one I saw was experienced enough to know which one, at that time.

    If it hadn't have been for a Private Immunologist/Rheumatologist in 1999/2000 whom I paid to see and spent 2 hours going back in time through my history, I am not sure I still would have been diagnosed now. He created a 7 page report of my history, linking a family trate of ulcers, herpes and the fibromyalgia together. I have never seen as good a report since from any Doctor that I have seen.....unfortunately now that Doctor has retired.

    12 years ago, information on the internet was barely existing and the consultant I saw then had copied a one page medical report on Behcets Disease with Fibromyalgia. That is basicly all I had to go on in the way of information.

    There was barely anyone in the NHS who knew about this disease and most Doctors I saw for many years after that, either thought it was just about a few ulcers in the mouth or didn't believe anyone could have it, because it was so rare.

    I was left to find my own answers to the many symptoms I had at the time and had no medical treatment at all really until approximately 8 or 9 years ago. I was only given Immune Suppressants 3-4 years ago.

    Thankfully things have moved on since then, with the help of organisations such as the Behcets Syndrome Society and the dedicated Medical Board of Doctors that they have had to assist them. Followed by all the work put in to receive funding for the Centres of Excellance, that we have now.

    With this forum now, we can share information and help with finding good consultants.

    I still am my own specialist and I know it isn't perfect out there, but just think what it would be like if we didn't have the internet.....I am not sure even 1000 of us would have been diagnosed.

    A very frightening thought !!

    Andrea

  • Three words that I shall write and not abbreviate....OH MY GOD....

    I honestly know that after reading a few blogs that my behchets is 'tame' compared to many, including yours, although I can still be floored with symptoms...

    I think you are amazing to have fought on to find a name for your disease..but I am gob smacked that you were only put on immune suppressants a few years ago..

    I think you are right in saying that the BD society and the forums on the internet are a great help..

    When I was first told it took me so long to get my head around the idea of BD.. The mouth ulsers Id always had...and I ahve learned to live with..but the genital ulsers.. I was hysterical...I was only in my early 20's the first time I went to the docs with them so you can imagine...

    Id like to read some of the books written but they are so expensive because so little of them have been printed..but then Id probably need a medical degree to understand them...I love the internet and I hope that the information filters through on to forums like these and then maybe less people will suffer in silence

    thankyou so mucho xx

  • Here are the specialists I have seen over the last 6 years to address symptoms as they have appeared and needed attention:

    internist

    gastroenterologist

    neuro-gastroenterologist

    gynecologist

    endocrinologist

    therapist

    hematologist

    psychiatrist

    allergist

    ophthalmologist

    pulmonologist

    Here are my upcoming referrals (after seeing a new internist this week related to moving):

    ophthalmologist

    uro-gynecologist

    rheumatologist (who has experience with Behcets patients).

    neurologist

    dermatologist

    I only wish to see one person and that is my new internist...however, she has stated unequivocally that she has no idea how to manage Behcets symptoms.

    Had I known that I would be such an exposed and experienced patient at this point in my life I would have definitely applied for a PhD program...about being a patient.

    The irony after seeing so many of these specialists is that I MUST continue to advocate for what I need...and often I have no idea what type of relief is available (however, I have learned so much after reading this Behcets website).

    It would be a dream come true to have one of these docs give me advice regarding a salt water/tea tree gurgle such as Andrea has offered. Every are of my body appears to need a good salt water/tea tree gurgle ;)

    I have been reassured that I am not crazy. Feels crazy to me!!

  • oh bless you...I dont know how I would have coped...

    gum clinic

    dr spickett... thats it... If I could give you a big hug I would!!!!

    The stress of going to appointments alone must be enormous.. your BD must be bad enough to be referred to all these, I can only sit at my computer and squirm at your list and think how bloody lucky I am!!!

    I too love the tee tree gurgle!!!!

    The first medication I was put on was colchicine.. not very pleasant on your stomach but it stops inflamation in your body.. I have added to my meds over the past few years, but one thing is certain, I could NOT live without decent painkillers!!!

    I hope to chat to you again and see how you get on take care x

  • Thanks Supernova

    I am glad you like my saltwater/tea tree gargle :)

    I have found many natural remedies along the way, mainly out of the desperation of being left alone and without treatment for many years, before diagnosis.

    I know exactly what you mean about the amount of Consultants we end up seeing and having to advocate for our needs. It is the same for most syndrome type conditions. Such as MS and CFS and many other autoimmune diseases, this to me is one of the most exhausting and frustrating sides of the medical proffession.

    I think we are lucky if we manage to get one of those Consultants you have mentioned above to be experienced in Behcets.

    Behcets is a strange one because of the skin/mouth/genital involvement it isn't always obvious to link pain in joints etc with this. So we end up possibly not seeing the type of Doctor we should be seeing in the beginning and being passed from pillow to post.

    From my experience a Rheumatologist is possibly the most versatile and can sometimes manage the condition without having to refer to other specialists too much.

    The Rheumatologist I see now, became experienced in dealing with Behcets because he listened to his patients and investigated it himself, instead of passing them on to someone else who didn't have experience in Behcets. But still he is guided by me rather than me being guided by him and he is not afraid to say so.

    We could do with more Doctors like this.

    Good luck supernova, with your new Rheumatologist...sounds promising.

    Andrea

  • Hi Dawnie,

    I'm pleased you have a great specialist and you are lucky to have this. We've calculated that on average, a GP would need to live through 5 lives as a GP to come across 1 Behcet's patients in England, so it's unreasonable to expect them to be experts although some are very helpful.

    It's also worth mentioning that the Behcet's Syndrome Society is holding a conference in October on Saturday 13th in Peterborough. All members and their families are invited and we have medical speakers to explain how to manage your pain along with information about the latest medication and about the Centres.

    If you want further information, please see our newsletter or our website behcets.org.uk

    Hope to see some of you there!

  • I actually feel sorry for GP's..there are so many different illnesses out there that it is unreasonable to assume they know everything, however when a doc flat out argues with you about using a steroid inhaler as a means to control mouth ulcers then it is a tad worrying!!!!

    This was only one doctor though...and most cases when I appear at the surgery (which I avoid like the plague..) my doc more often than not asks me what Id like as treatment.. as they dont really fully understand (which I get)...the disease as a whole..

    But I am thinking that as a mother of a child with eczema, I have trawled the net for information on this subject so I can ask questions, surely at my surgery my doc would find it useful to do a little research on BD....??? Even the smallest of information would be of use, and the more people are aware of the different diseases and their symptoms then less people would suffer...

    Thank you so much for letting me know about the conference, with having my wee man I dont know if I can make it but I would absolutely love to go..

    thanks so much for your response

    Dawn xx

  • My concern comes from Doctor's reactions towards a patient because they do not understand the condition.

    I do respect that not every Doctor I see will understand Behcets, but in the past I have gone to great lengths to print out factsheets that have been written by other Specialists [who are experienced with this condition] and yet Doctors would still rather blame the condition on the patient in the form of it all being in our heads, if the test results don't show what they would expect to see.

    Thankfully, I am now not in that postition any longer as I have 2 specialists [Rheumatologist and Neurologist] who have experience with Behcets and work closely together, although they are in different hospitals

    My neurologist did not have experience with Behcets when I met him, but it was him that suggested I had Neurobehcets even though the MRI's did not show it in my brain. He took the time to read the factsheets from the BSS regarding Neurobehcets and accepted that it doesn't always show on the MRI's. He also felt I have a progressive form of Behects as I have never been in remission in over 20 years and my condition has gradually got worse in that time.

    He finds my case interesting and we are learning together as it should be. A patient and Doctor relationship should be a 2 way contract.

    Without his openmindedness I might never have been diagnosed with neurobehcets and have possibly been even more sick and disabled than I am today.

    Andrea

  • Ugh. 4 years ago a dear acquaintance of my husband and myself stated 'We believe the tenets of the book, The Secret, and we really think it could help you'...

    Where is reason in this Behcet's experience, for anyone involved, pray tell?

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