Difference between neurobehcets and behcets with neurological symptoms?

[lesleyg]

I notice on another question it was bought up that there is a difference between neurobehcets and behcets with neurological symptoms. Pretty sure I am in the second category but would be interested in any comments.

Lesley

[Hidden]

This is such a serious subject (not that anything else isn't!) that I think it should be left to Specialists to explain, I did make an attempt to give a very basic answer within my own experience and understanding on the thread you are referring to. I felt I ought to do that as I was responsible for bringing up the subject in the first place. I didn't want anyone to assume that if they have potential neuro symptoms they definitely have neuro BD.

behcetsuk.healthunlocked.co...

[amietamant]

I've read about this and spoken to some Behcet's neurologists and rheumatologists. Their general consensus is that Behcet's is the basic disease for all of us BD patients and there aren't separate diseases based on symptoms. Thus there isn't GI-Behcet's, ocular-Behcet's, or pulmonary-Behcet's, etc.

However, if a patient who meets the criteria for Behcet's develops prominent neuro symptoms (and other causes are ruled out such as medication side effects, psychological issues, and unrelated problems), then they can be given the label "neuro-Behcet's," but not in the sense that they have something separate. It's more a label of convenience for the doctors who focus on treating CNS symptoms caused by our autoimmune vasculitis.

However, you will notice that "neuro-Behcet's" has its own Wikipedia page. Still, it doesn't distinguish between what triggers that diagnosis vs. a BD patient with some neuro symptoms. It's all the same disease, with variants and clusters of symptoms that can change over time. In 3% of patients, neuro symptoms can show up first, before other BD symptoms, making the diagnosis very difficult until the disease progresses.

My rheumatologist once referred to me as having "neuro-Behcet's," but I pointed out to her that I have many other symptoms and the neuro ones aren't even the most disabling anymore. So she corrected herself and agreed that I had BD with neuro symptoms, albeit ones that don't show up on MRI's. During a flare, whatever's causing my CNS symptoms might show up on a brain perfusion MRI or a SPECT scan, but I haven't had those yet.

In fact, my current BD symptoms are more focused on the ulcerations, arthritis, and acne, which is a known pattern with a higher chance of being hereditary. I have the full text of this article which better explains that this symptom pattern showed up more in families than other "types" of Behcet's: rheumatology.oxfordjournals...

I know there is controversy out there about this neuro-Behcet's label, but a patient can't have "neuro-Behcet's" without having Behcet's Disease, thus it can be a component of the disease but not separate. In fact, neuro symptoms often flare in conjunction with other BD symptoms, showing that there is a single disease process to blame.

[devonshiredumpling in reply to amietamant]

I've read and reread Tigerfeet's post and it seems to me she has said exactly that - but in simpler terms.

And I'm surprised you cite Wikipedia! I'm pretty sure the majority of internet savvy folk are aware that Wikipedia is written by a host of anonymous volunteers and there is no requirement for peer review as there is in 'serious' medical journals and papers. This requirement is ousted in favour of the ability to include anyone who wants to contribute.

I am not suggesting for one moment that nobody should ever use Wikipedia as a source of information but for serious, highly technical medical information it should never be a first line resource.

As a researcher (I have two research degrees, one of them at Masters level) I would be far happier to use and reference Tigerfeet's direct quote from Dr Kidd in another post on exactly the same topic. A reference to Wikipedia would have any serious researcher kicked out the door! No matter if the rest of her sources were admirable, just the one Wiki reference would ensure all her hard work had been for nothing because it just would not be taken seriously.

I know that Tigerfeet's main thrust when answering questions and contributing to discussions has always been to present information in simple terms, understandable by anybody who might visit the site. She does not talk down to people and she certainly doesn't use 10 words where just 5 will do.

Her whole philosophy is to dissipate fear and draw back the blinds that invariably shroud medical research. When asked she describes her own experience in the week following her diagnosis with BD. Like many of us, if not the majority of us, she went straight to the computer and searched for research papers and information on BD. The first paper she read told her that she could and would live a relatively trouble free and normal life. The second article warned her she would be dead within five years.

She is desperate to rule out a repeat of this experience for other newly diagnosed patients.

I don't want to enter into a war of words - or a war of any sort really - I simply do not have the strength or the desire; I certainly do not have my wits about me at the moment.

I simply ask you to remember that there is more than one path to knowledge and technically worded research papers aren't the path most folk would choose to follow - especially as it takes very special knowledge to sift the wheat from the chaff. There are a lot of words out there masquerading as good research which are anything but.

[amietamant in reply to devonshiredumpling]

I know what Wikipedia is and I never use it as a reputable research source. I only mentioned it because if someone did a search for neuro-Behcet's, that's one of the results they would see. I was NOT "citing" Wikipedia. I'm sorry you misread my post.

Perhaps you missed my post on my background and qualifications regarding Behcet's research. Some BD patients are very interested in the more detailed current research about Behcet's, so that's what I analyze and pass along on this and other BD support group sites.

Everyone here has something valuable to say or share. If it bothers someone, they can always skip it instead of making personal attacks.

[Hidden in reply to amietamant]

I am saddened to see that you have chosen to take Di’s response as a personal attack.

We are all aware that having something valuable to say or share is great. Querying posts, commenting on them and voicing opinions and concerns we have about them is part and parcel.

I could have taken issue with your post, but felt it more important to return to the original question and clarify my response.

I am most grateful to Di for the valid points she makes and for explaining my ethos. I'm disappointed that it was necessary in this instance.

To quote my earlier post (capitalised to differentiate, I'm not shouting)

“THIS IS SUCH A SERIOUS SUBJECT (NOT THAT ANYTHING ELSE ISN'T!) THAT I THINK IT SHOULD BE LEFT TO SPECIALISTS TO EXPLAIN, .... I DIDN'T WANT ANYONE TO ASSUME THAT IF THEY HAVE POTENTIAL NEURO SYMPTOMS THEY DEFINITELY HAVE NEURO BD.”

Whatever our background, qualifications and experience, we are NOT medically qualified Behcet’s Specialists.

So let's take this back to where it should be and leave it there.

[Hidden]

The question was about the difference between Neuro BD / BD with neuro symptoms within the parameters of the disease. Not whether they were separate from BD.

I explained it in ‘simple terms’ because I didn’t think it necessary to go into details, my intention was to allay fears that not all neuro symptoms have the same cause or consequence; BD with neuro involvement is where the nervous system can under function as a consequence of the disease rather than as a result of the disease, ie the disease can cause the nervous system to under function when it could function better.

Neuro BD is where permanent damage has occurred.

[Charms1]

lesley, thank you for asking your question as i was wondering also what the "difference" may be between the two diagnoises; it appears that a specialist would clarify and that like with many BD symptoms their are often no exact definitions....we all must be kind to one another and help each other out the best we can with the knowledge that we have gained over the years and from the drs who are unfortunately also unsure of all of the BD symptoms/definitions.... my best to all of you, have a good day today... : )

[Jennie-Meg]

Have just read these recent answers, I am a little saddened by parts of it. It is easy when we have been researching things for many years to perhaps, forget or or not be able to put ourselves back at the beginning, I too found a couple of replies at the start a little on the mildly 'short' in tone, but have found since that people who have been dealing with BD for years have in general a far better concept of what is going on than even my GP. And I for one have really appreciated the knowledge they have passed on, I would however say that a lot of people are given a pamphlet produced by ARC on their initial diagnosis, and it is criminally short on information,so they go to the Internet which has a wide source of info, but sadly lots of people are not aware of the problems of Wikipedia . A problem that I feel most strongly should be addressed by someone, have no idea who, though. My friend with MS had the daylights frightened out of her by wikipedia until I put her in touch with the MS society, so it seems a problem across the board, although recognised by people who do use the Internet a great deal . The pages here and this site as a whole, I hoped and believed is designed to help each other, and I have been very helped. Please keep it that way. For others information, my Consultant has freely admitted that he has problems in describing the differences in "types" of BD he said that really only the c of e's are in a position to explain completely. I have gained more understanding from the people posting here than from the Consultant.

I think a lot of people feel very ill when they write on these pages and perhaps we should all remember that. The help I have had has been incredible, but because I feel I want to approach my condition from a completely different angle, I have decided to not be involved anymore, my time has been short, the help invaluable, but for me, I need to find and follow a different way of handling my condition. I cannot thank you enough for your help and reassuring answers, and I wish everyone of you more comfortable days and easier lives. My warmest wishes to you all.

[lesleyg]

Hi everyone - thanks for your comments. I have an appointment with my lovely neurologist in a couple of weeks and might see if he can give me a layman's definition to post. Feeling a tiny bit off at the moment so just posting short comments.

Cheers

Lesley

[andreafm]

My neurologist uses both versions on his reports...i think it depends what mood he is in

My understanding as he explained to me is that the diagnosis of neurobehcets is used when lesions are detectable by an MRI. He says the same as Dr Kidd in that sometimes the inflammation is so defuse (thinly spread) that it doesn't show up on an MRI either way the symptoms of neurobehcets exiist.

Many neurologists insist on there being visible lesions before diagnosing neurobehcets whereas I think those DR's with more experience with behcets are confident enough to diagnose neurobehcets as long as they are confident that you have behcets itself.

Thus in his opinion I have neurobehcets even though it does not show up on the MRI as lesions.

Sometimes he uses neurobehcets and other times he uses behcets with neurological symptoms. Other times he uses behcets of the central nervous system.

Andrea

[lesleyg]

Hi Andrea

That makes a lot of sense. When I has hospitalised in October I was told there were no lesions in my brain or spinal cord (thank goodness).

I think I may have said this before on another post but one of the doctors told me they think I had a hotspot in my 'cerebellum' (which didn't show up on the MRI.

I'm not feeling real well at the moment - my lower legs are 'going' again but I don't have the pins and needles in the arm.

Am planning on spending the holiday period very quietly reading and sleeping.

Lesley

[mbuck-60 in reply to lesleyg]

hi there i,m mandy i,ve had 2 tia,s in 3 years but all i,ve been told is that i have blockages of the small vessels on my brain but the neuro,s hav,nt really explained i am waiting for an appointment to go to liverpool should i ask them about it sorry forgot to mention i,m pretty new to this site i,ve had bd for 16 yrs i was under prof powell at the qmc nottm i was sorry when he retired i was left for 4 yrs with no help under dermy but never had any skin problems whatsoever i,ve moved now & my doctors have been brill they sent me to qmc again but now i,m under the right people rheumy

[andreafm in reply to mbuck-60]

Hi Mandy

Sorry I missed your question as it was tucked on the end of this posting...luckily I had another look in and saw it.

It might be better for you next time if you make a new question as lots of people will see it then and you will get more replies.

It is important to tell the Centre of Excellance all that has been going on. I know 16 years is a long time to remember everything, but it maybe helpful to them if you can type up a one page history giving them all the symptoms and illness that you have had.....it makes it easier when seeing new Doctors as you don't have to try and remember everything when having your appointment.

Keep it to one page if you can with short sentances and any Dr's names with the hospital and treatment you have tried. Doctors don't have a lot of consult time to read lots and lots of info and so keep it as direct as possible.

I also get copies of any reports so I can pass them onto Doctors especially if they are in different hospitals.

Good luck at Liverpool...I hope your appointment is soon.

Andrea

[andreafm in reply to lesleyg]

Good for you lesley

It is equally important to rest when you are recovering as it is when you are unwell.

Hope you have a restfull holiday.

It is freezing here in the UK and so the usual daffodils don't even want to come out. I think I will join you with that rest and a quiet read.

In spirit anyway

Andrea

[Zebra]

There is a clear difference between the two as Dr Kidd explains on the BSS website. For instance, I have bd with neurological involvement as my diagnosis, but even the top medics internationally aren't sure yet if I have Neuro Behcet's. I only know a handful of patients worldwide who do.

[lesleyg]

Thanks Zebra - will go back and print off the fact sheet.

Cheers

Lesley