Iv to have a brain scan..and I was just wondering if anyone has had one and what to expect...
And if so what are your symptoms?? and at what rate have they occured?? and whats the medication??
Basically anything I should want or not want to know...in plain terms..please xx
Have you been specifically diagosed with neuro BD by a BD Neurologist?
Hi Dawnie - I've had quite few, just relax (as far as possible) and 'go with the flow' with all the tests.
Very few people will have as many tests as what we (BD patients) are having. As I say "at least I know what I haven't got".
There are different types of brain scans. With an MRI it can be a bit claustrophobic (noisy and a small area) - if you think that might be a problem make sure they know in advance. They might give you something to calm you down beforehand (I don't think they like doing that so only ask if you think it will be a problem). I don't mind it - just 'tune myself out'. Also, you have to lie very still for about 15 minutes.
Let us know how you go.
Lesley
Exactly the same as Les, Dawnie. MRI scan of the brain and upper vertebrae. My brain seemed to be there and intact. They found a cervical spondylosis in my spine, which could be an alternative reason for my headaches other than Behcets.
It's not scary - you can hear the magnets humming - the sonographer speaks to you through an intercom straight into the machine and will ask you to hold still. I was also offered a choice of music to be played! The MRI machine is a tunnel and, like Lesley said, can make you feel a bit claustrophobic. If you have a CAT scan, it's more of a doughnut so you don't feel so closed in.
I'm not qualified to tell you about neuro behcets but I think there are a few posts on here about it because I know one or two members have been diagnosed with it.
Hi dawnie. I have had a lot of these scans and as previous replys have said they are a bit claustrophobic. I am not a claustrophobic generally but even I can imagine what it would be like to someone who is. The scans are not painful or uncomfortable. The sonographer talks to you at the start of each new scan and tells you him long each scan will take e.g. the next scan will be 3 mins. Then the next scan will be 5 mins. I pass the time trying to count to three mins or 5 mins see if I "win" stupid I no but it really does take my mind off the scan. They found I have syringomyelia but they don't think it is related to BD. So I have two rare illnesses which aren't connected. So good luck and try your best to relax and play the counting game
Awww,, Iv had both MRI and CT before..I thought it was something different...
Iv not been diagnosed with anything yet.. thank god, which Im ever so happy about..Id like for my behchets to remain at this level for as long as possible..
I love my life, my job (which I dont want to give up) my son who needs lots of attention... and my home..I just like to keep on top of everything...
Id say im as curious as I am a bit scared of neuro behcets.. Id like to know more..in simpler terms...
Thanks for all the responses...
dawn x
Hi, the reason I asked my questions above was because I wasn’t clear what type of scan you are having or exactly what you wanted to know about the neuro side of things and why, because the answers you get will vary depending on that. There are various types of scan, MRI, CT, PET etc.If you are not sure what type of scan you are having I suggest you ask.
Neuro BD – if you haven’t been diagnosed with it I would hold off finding out others’ experiences of it, you may be worrying for nothing. Particularly as symptoms, experiences and treatment vary between patients. Also, people (including doctors) confuse neuro BD & BD with neuro involvement which is different. It’s important to know which, if either, it is.
I know the various scans Iv had all of the above, I thought one for neuro BD was different...I try to take BD one day at a time, and have found if I worry I get sick...
I am using the forum to get to know and understand others with BD...I thought that was what it was all about...to share experiences..good and bad..
I want to know as much as I possibly can...hence after years of my docs and specialist telling me to I have joined the forum for as much needed support as I can get...I understand so many of the problems that others are going through, and have had several in box messages asking what I use and how I feel when my 'flare ups happen..
I know enough about BD to write on a stamp...but I desperately want to know more, as do my friends and family.. I want to know how to slow down the progression, how to minimize the 'flare ups', but most importantly how to continue leading the life I love and cherish, and grow old....which Im even uncertain about that...
I ahve so many questions (like most people, I assume).. but Im pacing myself to ask the ones at the front of my thoughts, and the ones that directly involve me..
Id never heard of DB neurology before monday.. all I know that is my BD is growing..and I get worse each year.. I want to slow that down..and I know information can be dangerous, but if I can find one small piece that could help me in any way then I want to know!!!
Thankyou so much for taking the time to write to me (all of you) esp tigerfeet..I very much appreciate it
Dawn xx
Hi Dawn, I'm sorry if I appeared patronising, it was not my intention, You are absolutely right that this is a place to get to know and understand others and also to get support and suggestions. I just get concerned when people ask questions and I am unsure exactly what they are asking about and why - eg neuro BD or BD with neuro involvement. Because the last thing I or I am sure anyone else wants to do, is cause you any more worry than you already have, and if someone was to say for example, that they have memory loss, someone else who has memory loss could think it is for the same reason, or worry that it is going to happen to them and this may not be the case.
I don't know if you've had a good look at the factsheets on the Society website, but they may help your loved ones to get a better understanding of how life is for you and why.
Getting worse each year may be because the rights meds, treatment and management haven't been found for you yet. It doesn't necessarily mean things will continue that way.
I agree that it is definitely a good idea to be well informed - the ratio of patient to doc when it comes to knowing about the disease is still in favour of the patient I believe!
It's a shame that there can't be sub forums and private chat areas here, I think that would help enormously. It would also be good to have a document area where people could write an account of things that help them, coping strategies - well all sorts of things really. One thing I think we can do, and I am toying with making this a blog post, is to be more precise with our question headings. Then we can scroll quickly through the forum to see if our questions have been answered already, or if there is something similar that would help. On looking through the blogs and questions I note that there are duplicates - and some blogs have questions in them. If it's been answered already other members might not respond to it a second time. It's a bit of a minefield, especially when you are worried and looking for answers. The more popular and busy the forum gets, the more pages there will be, so perhaps categories would make it easier.
This is not a personal criticism of ANYONE, but simply an example of what I mean - a question headed 'my daughter' or 'help' may not get the best response because there is nothing to suggest what the question is. It would be great if we could have a system whereby things were catagorised and therefore easy to find. e.g. 'SYMPTOMS - sore eyes' or SYMPTOMS, FATIGUE' and 'MEDICATION - methotrexate.' or CENTRES OF EXCELLENCE - referral query.' and so on. Anyway, I've gone off topic a bit, sorry! But this thread has reminded me that these things have been on my mind for a while so better to say it now than forget again. Best wishes.
omg...dont be daft...I didne think that at all your just worried that im over thinking!!!! and in some cases you'd be right!!!!
I would love there to be an online diary of sorts, on how to cope when things get bad...for me its music reading and crosstitch!!!!
I totally get your suggestions on the website, maybe its something admin could look into...although with everything it will be money...my work (vandella flowers) has just launched a new website, and I can tell you it was not cheap...and it has to be maintained daily...
I know as time goes on the website will get more popular...iv also joined the facebook group... which Iv has a small look through.. and its basically the same as here...people desperate for any info they can get on BD...
you take care and dont be shy to put your opinions across to me...sometimes its good to know that I am over thinking!!!!!!
Dawnie xx
Okay then, let's start a question for admin about the way the board is organised. Sorry Dawnie old chap to hijack you xxxxx
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