Shall we INFORM THE WORLD?

Our exchanges through this website has been very informative. We now know that there are a number of significant symptoms that go beyond the BD symptoms that we read of in medical journals and websites.

But the challenge is: many of our doctors do not know of these other symptoms. In my case, i try to inform my doctors, but i feel that my efforts are not successful because:

1. My experience could be an isolated case; numbers make a big difference.

2. my doctors seem to want to focus on the clinical ( and admittedly very important aspect) - for example, as long as my uveitis does not flare up, and brain scan is negative, all is considered well with my world - even if I have brain fog, pains and constant headaches

3. Because of point 2 and because of time constraints, i end up not telling doctors of my other "lesser" symptoms

Maybe we can ask the webmaster of this site to open a public section, wherein they post the commonly experienced BD symptoms but which are not yet being recognised in medical literature?

If you like this idea, any suggestions on how we compile the symptoms?

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  • I entirely agree and in fact started my own little symptom comparison chart some while ago. You may have read some of my replies to questions, especially with head, neck and shoulders in fact I my case my whole skeleton.

    My thoughts were to ask people on she BD site to when they contracted BD, when diagnosed and which symptoms have not been recognised. After 30 years of BD and many, many different diagnosis and my doctors lack of knowledge of the disease I long ago stopped telling them of my concerns at the way my body is deteriorating etc. since this site opened I have been monitoring others journeys with the disease and the symptoms which are now recognised and weren't when my journey began.

    Having said this I think we have to be careful not to open it so wide that we may have non BD patients or even some weirdos jumping on the bandwagon as this would negate our findings.

    I think we should as a community choose say initially 3/4 members to decide upon how we should go about this and then at each stage check back with the community to ask if they are on board with the way forward...stage by stage. There might be people who do not wish to be involved so start small, step by step and build up. We also definitely do not want to upset the origan Behcets Society after all the hard work they have put into helping, fundraising , Centres of Excellence and this invaluable site.

    I look forward to seeing the other replies.

    Hugs

    Billi

  • Interesting Billi....I was typing away while you responded. Jill

  • Realised just now that devnshiredumpling made a similar post a few years back (making a list of symptoms). Maybe we can build on that -

    Prhaps we can also add on to the symptoms - how BD affects patients at the functional, " daily" life basis.

    Your idea about "community reps" sounds really good. Definitely, there is a need to make sure that the inputs are coming from real bd patients.

    Bd is such a complex subject - we do need to think this through.

    For instance, we need to balance between making our condition understood and our condition being used as a basis to dismiss us from the productive / job market. Maybe the key here is to underscore the progression of symptoms? I have had BD since i was 9 or so ( but diagnosed in 2007, when i was 48.) Because i did not know what i had, employers did not know what i had, and there is no link with jelly brains, I managed to get employed. jelly brains eventually did affect me - but i would not want young bd patients to be "categorised" right away as "potential jelly brains" and miss out on some really interesting jobs because of the potential JB

    What a conundrum! Community reps, help please!

  • I was thinking along the same lines Magician.

    I'm hoping to book to go to the International Behcet Conference in September and I was under the impression there will be a Q&A session and I would take the couple of most popular questions with me on behalf of those who cannot attend.

    My personal favourite conundrum is jelly brains. I tried to keep our thread light But I believe the symptom is grossly underrated as to the effect it has. It played a key role in leaving my career and is still at times utterly disabling.

  • My personal favorite too - jelly brain is making me realize that i am not fit to work anymore - at least not for the line of work that i have been doing and trained for. It is also a favorite for another reason - imhabe afeeling that it is one of those symptoms that will not be backed up by mri, spinal tap, etc - hence, ignored by doctors - but signifcantly affecting our daily lives

  • Good idea. Unfortunately I can't make it, however there are more than a few of us would like to know more about head/spinal problems in relation to BD.

    Ta if poss.

    Billi

  • Bad day but count me in!

  • I will give u a piggy back dumpling cxxxx

  • I think that would be a really good thing to get going and totally agree with things you guys have already posted. Count me in. C x x

  • Hi yes we are reading from the same script. Maybe if people put themselves forward for say a committee of 3/4 to start and the community can vote which people they prefer on said committee. Keep me in the loop!!

    Best

    Billi

  • Just looking in at posts at the moment as not brainwise enough to cope with too much.

    You might have noticed at the righthand side of the main page that the Behects Society Admin can put up a Poll for people to vote with. At the moment the poll is for "how long ago were you diagnosed with Behects" and there is a pie chart with the results.

    You could use the same polling system/format to have your list of symptoms and people could tick/vote on the one's they have......this will give you percentages etc on how many of us experience the same symptoms.

    Will take a little working out but shouldn't be too difficult with the cooperation from Behects Society Admin.

    hope this makes sense :D

  • Great idea! I'll keep thinking as to how we get the info out there but it strikes me that there are many of us with similar symptoms that are not yet recognised even by the Behcet's experts as being part of Behcet's.

  • I think this really has to happen. We all seem to know more about BD than the specialists and that's because we live with it. I know by chatting on this sight the body pains & aches seem to be a problem the majority of us suffer but due to them not being recognised by doctors they are generally fobbed off.

    Andrea for someone who is having a bad day your thoughts where wonderful and accurate. We don't want people just messing up the questions we need it to be legit ament. Xx

  • thanks Michja..that's good to know as I do have difficulty with getting my words out properly......both speaking and on paper and when it is at it's worst, I tend to back off for a while :)

  • I have been thinking along the same lines. It's all very well sharing our symptoms here, but the Drs, Specialists and Rheumatologists need to know these other symptoms from other BD sufferers as well. I will speak to Zoe Lovett about this and perhaps you could as well? Go onto the private group we have on Facebook I think. :)

  • Hi, nettie545,

    Great idea to take it forward. The Specialists should know our many seemingly disparate symptoms and how altogether, these affect our personae, our lives, our careers, our aspirations.

    I do not live in UK though and have no idea who is Zoe Lovett. I have never used Facebook - any tips?

  • Magician.. type in UK Behcets contacts only on facebook and you will see the site. :)

  • Hi Magician.. Zoe says the UK site is only for people in UK as it is a closed site, but here is the link you could go on to for the international one.

    facebook.com/l.php?u=http%3...

  • On Zoe Lovett's Facebook page someone asked the group 'What would you say is your most disabling symptom?' Was the most common answer ulcers, or skin problems, or joint pains, or uveitis - the defining symptoms of BD? Nope. A clear majority said fatigue, brain fog and headaches. I thought at the time 'pity the medical community can't see this'. It would be great if a poll asking this question could be put here.

  • I fully agree on the need for the medical community to be aware of how our daily lives are really affected.

    While uveitis, joint pains and the rest of the symptoms are extremely serious from the medical point of view, I have managed to live through them and work productively.

    But it is the headaches, fatigue and brain fog that compromised my capacity to produce work, within crazy deadlines, that meets the levels of accuracy, precision, conciseness, robustness and "presentational communications" ( producing powerpoints/imageries that would make non techies understand techie stuff - how on earth did the inability of others to absorb and digest information manage to be dumped as problems of the techies instead of being acknowledged as limitations of the non-techies!?) required in my profession.

    Not to mention meeting the "social points" that should not be mixed up with work but are mixed up, anyway - you know - things such as attending cocktails, receptions and being gungho, prettified, witty, energized, smart, intelligent and all the other "zesty" stuff of the human race.

  • Iv only just seen this post and what an amazing idea, I find it so frustrating when they're dealing with and treating what they think are my main symptoms, and to me they are the ones that matter the least, the body and muscle pain, brain fog and fatigue are what I find so lies inhibiting... Please let me know if anything has started to come of this yet and where

    Thanks for someone having enough brain power to think of this!

  • As far as I know, not much has happened. Nettie 545 suggested facebook, but I just never feel doing facebook.

    I saw yesterday a website called change.org - it is a site that facilitates requests for change. Looks promising, but I think a strong support base would be needed even before putting it together.

    Requires lots of energy which seems to be in scarcity these days...

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