Now that neurologists have discovered that perfusion MRI's (p-MRI's) are more sensitive to detecting Behcet's neurological involvement in the brain, fewer specialists will rely on regular MRI's alone to say a patient doesn't have evidence of neuro-BD.
In this 2012 study, many Behcet's patients with negative MRI's showed silent neurological involvement when p-MRI's were used. Using p-MRI's could also prove why many Behcet's patients have frequent, severe headaches and mild cognitive (thinking, memory) problems even though their other neuro tests come back normal.
Back when I was having significant Behcet's CNS symptoms, I remember one pompous neurologist who pointed at a normal MRI of my brain and told me, "The pictures don't lie. Nothing's wrong with you." I was so mad at him because I knew something was very wrong and that I wasn't imagining it.
Now we know that pictures DO lie if you're not using a test sensitive enough to find the problem.
Written by
amietamant
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Yes I agree with you in that mri's do not show everything up.
This can be really frustrating if you happen to have a neurologist who insists on there being evidence to prove what symptoms are in front of their face.
Luckily I have a neurologist who doesn't think this way but it has taken me many manyyears and a lot of abuse from DR's to find the right consultant.
This is good news if the tests are more accurate than the Mri's are but I fear the lack of access to such equipment will still only help the few who are lucky enough to have such tests.
Do you know if this will this be available to the centres of exellance at some point
Hi there, I wondered if you could give me some advice.
I have had BD for 8 years, had suffer in pain every single day, I have had headaches for as long as I can remember really bad on occasions were i have spent weeks in bed unable to move my head the headaches range from server that last all day and some that shoot pain at each side of my head I get server pain aboveboard eye sockets were my eyebrows are too.
I went to see a nuro doc in October last year who put injections in both sides of my head at the back nearest to my neck he said I had server something no idea what and advices to have them every 8 weeks he said that he would send a letter with a telephone number to ring I received a letter not much in it no telephone number or anything. I have just had an MRI scan last tue went to see Nero again different doc she had no interest said my MRI was normal and suggested I come off all my meds. She askede what tablets I take I said u already have a list she search through and found the list which showed incorrecteds on it I advised of this and also that my meds have just changed she didn't update it turned round and said every one gets headaches offerede more drugs which I refused and left.
I felt worthless uncared for and at the end of my tether. I go to Birmingham in may I advice my rumey of what has been said.
Your headaches sound very disabling and deserve to be investigated properly and it is really upsetting when you get this type of response from Dr's. In the past I have had this response from Doctors when the MRI tests do not show anything and it really knocked my confidence. My advice on this is that it is important for you to find Doctors who are willing to listen and try to help properly.
When you say you are going to Birmingham in May is this to go to the Centre of Excellance there....If it is I am sure you will be treated with dignity and respect there. So it is best if you can hold on and wait to see them.
In the meantime ........Try and make a diary of your symptoms and in particular when you are having these headaches and any other symptoms you are getting at the same time. Keep it short and in note form so any Doctor that you see can tell how frequent they are and how long they last. Also note any medications that you have tried and if they have helped at all or not.
Did the injections in your head/neck help you at all and if so when are you due to have them again?
Dr Kidd is a neurologist who deals with headaches in Behcets and his information is on the Behcets Society Medical information link
have a read of this and if you think it describes your headaches it maybe a good idea to copy this and show it to your Dr's. It has advice on how to help these sorts of headaches and it will also help you to describe what they are like.
You will find that headaches are quite common in behcets and can be pretty awful. You can read some of the other postings by putting the word "headaches" in the search bar on the top righthand side of this page.
Hope some of this practical advice will help you to rebuild your confidence to tackle Doctors again....don't be put off.
we are always here to listen and give advice if we can
Thank you very much. I have been going to Birmingham over two years now they are amazing there. I will talk to my rumey when I go and tell him about the headaches he requested the scan and hopefully will get a Copy of the letter the hospital send out.
The injections did help but after the 4 week u ended up on bed with sudden shear pain at back of head I couldn't do anything for a week it was awfull I looked like death. My head is bad now and my eyes nearly shut because of the pain. I never free of pain every day I suffer mostly with ulcers on my vulva mouth and per anal ulcers, have had them in my ears nose and spine.
I have read through the link you sent and yes my headaches match some of thoughs describe. I will start a diary as from tomorrow so I have it ready for may. I am so greatful for your advice. I find it hard to ask questions I normally just read everyone else's. so thank you very much. I hope your ok.
make sure when you do your diary, that you note if you are getting the ulcers etc at the same time or that they get worse. Also make a note about the injections and what ocurred when you had them.....try and keep it to one page if you can as Dr's hate reading too much, especially in a consultation.....Your rheumatologist sounds like he/she is interested.
Have you tried something natural like massaging gently with Oils such as Lavender which is great for headaches and helping to sleep....might help a bit to relax those muscles and nerves which when they are overfiring, can make it worse.
Andrea
P.S - Sorry amietamant for highjacking this post...hope you don't mind
Don't worry your not hi jacking lol it's my fault still trying to get use this site I thought when I replied it was the bahcets community so I went back to see we're I went wrong I guess this was health unlocked site and not the BD site.
So I will blogg later when I get home from work correctly. Even so you have been a great help. I wil make short notes for doc and go gets some lavender oil I must admitt no one has advised me of that before and if it helps sleep even better.
That is what is happening with my husband right now .. I feel like they are missing something. He has nero behcets where it is hard for him to walk or do anything , his strength is there but they can't figure out why he is all over the place and what meds to give him.
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Does anyone else have stomach issues with Behcet's?
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