does anyone have info on memory loss with behc... - Behçet's UK
does anyone have info on memory loss with behcets.2 doctors have differing opinions one said yes the other saying definately not
Hi there...I have neurobehcets and have memory loss. Mostly short term memory and word finding or saying the wrong word, when thinking the right one.
It isn't very helpful when you get differing opinions is it?
If you look on the Behcet's Syndrome Society website on this link it confirms this
behcets.org.uk/menus/main.asp - it states this:-
"Behçet's is a multisystem disease; it may involve all organs and affect the central nervous system, causing memory loss and impaired speech, balance and movement".
Perhaps you should refer your Doctors to the Behcets website
Good Luck
thanks for your reply ,I have always thought it was related. Now I can go armed with thr answer and maybe get them to understand. I must say that my usual consultant, who is very good, has not been present at my last few appointments,so I will have to insist on seeing him next time. Hopefully my next appointment will be at the new centre of excellence which has just opened nearby. thanks again.
Hi Kenjay...I am glad I could help you.
Perhaps if you contact the society helpline they can send you a print out of any further info that they have in respect of memory loss.
Other than that you could print out the info from the web page link I gave you.
It is a good idea to insist on seeing your usual consultant next time as I also find if I see someone else, they are not always up on what behcets actually is and they tend to underestimate it by thinking it's all about ulcers......which we who suffer with it, know it is not.
Good luck with your next consultation and please let us know how you got on...if you like
Andrea
I also suffer with short term memory loss and often muddle my words.
Depending on how active the Behcets is depends on the severity of this.
I hope this helps,.
Leanne.
thankyou you have made me realise that I am not going mad.I often muddle my words too.I often wonder if everything is blamed on behcets, when it is really something else, so I try not to do this. Also I often wonder if you or other sufferers sometimes find that other people think you are making things up or that you are a hypochondriac? This syndrome is so complex that people lose interest because we have multiple problems don't you think?
Yes I feel exactly the same and have actually lost friends over it as the think I'm making it up or over playing things when in actual fact they don't gear half of what's going on! I try to underplay my symptoms and over compensate constantly... That's why it's so lovely to be on here 
I hope u are all doing well!!
Moys x
I do not know if this is the right thread to pst under but as you are suffering memory loss and speach difficulties i have placed my experience here.
I could not agree more with the comments made so far. Behcet's is very complex and for some Behcet's is multi systemic and causes neurological effects.
There can be a very tragic side to Behcet's syndrome I know from absolute personal sadness that Behcet's must never ever be taken lightly by the medical specialsts and people with Behcet's must never be viewed as hypocondriacs. I lost my first born son aged 34 years to Vascular Behcet's to the major artories in March this year and he has left a little three year old boy. My son lived in the US and the doctors said he baffled them as his health symptoms were so complex. My son suffered three aneurysms two in his thorasic aorta and one in his abdominal aorta. He suffered several storkes and was found to have blood clots to many of the major vessels. My son became forgetful he was told by a doctor that he needed to see a psychologist as he was suffering anxiety when in fact he had suffered two strokes the year before he passed away and was suffering further neurological problems due to multi systemic Behcet's also involving neurological Behcet's. He fought so very bravely as the surgery was extremely hard and complex and he suffered the systemic effects of Behcet's post surgery. Me and my husband flew to the US to be with our son and i went armed with loads of information from the Behcet's society website, all the doctors took on board the information we gave them and spoke with Behecet's specialist in the US and UK and started treatment but unfortunately all was too late and our son passed away.
Some people say Behcet's is not genetic but i can only say i do not believe this as i have had a formal diagnosis of Behcet's for fiteen years , my eldest son had Behcet's and my youngest son is showing symptoms.
Behcet's can be a very crue, complex and unpredictable illness and can hold the most severe of all consequences for people. It makes me very, very mad when i hear that doctors dismiss things out of hand. Of course i understand that people with Behcet's suffer other illnesses and come down with cold, the flu etc but to just dismiss things out of hand for a person with Behcet's is in my opinion at the best a short coming in that particular medical practitioner but more seriously can lead to devastating miss - diagnosis and neglagence .Behcet's can strike any part of the body at any time and any where their is blood supply in the body. I implore every medical care giver faced with a person with a diagnosis of Behcet's to always rule Behect's in to any new syptoms as a starting pont and only dismiss it once all other relevant tests for other reason's and illnesses have been tested and proved positive and thus Behcet's can be ruled out, as it is a fundamental mistake in the first instance to rule Behcet's out as a matter of course as the consequences can be life taking.
I worked in public protection but my Behcet's is multi systemic and neuro Behcet's has effected my speach and memory and as a result i have had to give up work due finding memory difficulties and speach problems; i sound as though i have been drinking acohol as my speach is slurred and i have great difficulties trying to get out the right words i know what i am thinking but have difficulties remembering the right words and often say something totally unrelevant. I have balance difficulties, poor coordination and am loosing my swollow. My speach has slowed and my voice has become monosalabic in tone.
I have been told by my doctor who treats my Behcet's about the new centres of excellence who specialise in Behcet's "under one roof" as my doctor describes the new system, and he has offered me to attend one of the new centre's so i can been seen for the systemic effects of my Behceht's. Although i have been with Professor Haskard for over fourteen years and i have received an excellent service i guess i will take the leap and attend the new Behcet's centre of excellence as this will help the specialists deal with my Behcet's as a whole rather then attend several different clinics at different hospitals.
I am hoping the introduction of these new centre's of excellence will provide people with Behcet's with treatment under one roof/department, but will also have the positive effect in terms of medical students and doctors training and that Behcet's Syndrome will be given greater teaching emphasis, rather then be seen as too specialist to be affrded the time to be taught, will instead be affred the time it deserves to be taught properly so that the ilness is better understood, diagnosed faster, treated earlier and prevents death where possibe.
I am so pleased you will take the information from the Behcet's Society website to your next appointment, can isuggest you take a few copies and give copies to the doctor/s, nurses and ask for a copy to placed on your file. I wish you all the very best .
Hi sweet
I am so sad to hear how your son and the extended family have suffered because of this dreadful condition.
I think you put it so well and are brave to change from a very experienced consultant like Dr haskard. Although he isn't my consultant I have heard such a lot about him and these Doctors are pioneers.
I think you are right about being able to see specialist under one roof as I regularly see 5 different specialists [over 3 different hospitals] and this list keeps being added to as each consultant investigates for months, only to find no real conclusion.
I get quite depressed and very fatigued just trying to keep up with them all.
I also have my doubts about this disease not being genetic. Although my family haven't got all the difficulties I have, there are at least 3 others directly to me Grandmother, Aunt and my mother] who have lesser symptoms of ulcers etc.
I do hope you visits to the new centre of excellence help you and please could you let us know how you get on, if you don't mind.
best wishes Andrea
Hello Andrea
thank you for your kind words about the loss of our son, his death has asolutely devastated us, we will never get over his loss he was a lovely person so kind and caring, our wolrd has been ripped apart.
I am very sad at the thought of leaving Professor Haskard as he has been the central care provider for my Behcets for many many years and diagnosed me many years ago after a very long battle over many years of trying to find out what was wrong with me, for me he has been a very trusted care giver, has an excellent and second to non understanding of Behcets and has always worked in my best interests. I think Professor Haskard will encourage me at my next appointment to attend the new centre of excellence in London as i understand from my last appointment at the Hammersmith that the new centres hold direct funding budget for treatment therefore can provide treatment direct whereas other specialist have to make an application to Primary Care Trusts for people with Behcets to have expensive or/and new treatments. I believe the new centre in London will be where Professor Haskard directs me as i am now limited to what treatment i can take and my Behcets has progressed so he will want me to have as many options as possible.
It is lovely to see that people are responding to Kenjay's blog about memory loss/difficulties, as experincing memory difficulties can and is very frightening for people. I remember firstly having memory difiiculties many years ago when i was in my late thirties when having a long lasting neurological flare up. Over the years my memory has worsened and i forget events and things people have told me. My children tell me things and i forget they have told me. I forget both small and large facts and then when told again about things it is as though i am hearing them for the first time. I now write down as much as i can and i take lots of photographs of events and special times with my family. After a long carrer in public protection services i realised i found difficulties in retaining information and was advised by my medical care givers that the stressful nature of my job added to the amount of flare ups i experienced and caused my Behcets to progress. It was a huge decision for me to listen to what the specialist were telling me and to finaly gave in and leave my carrer behind.
I understand how you become both fatugued and depressed at having to attend so many different hospitals for treatment for each element of your Behcet's and know this very exhausting and can take a toil. I am told the new centre of excellence have a team of specialist under one roof and nuerology is part of the team. Is their anyway your GP can refer you to one of the new cetres? I am just wondering if your GP can refer you then you may be able to gain a better and quicker diganosis.
I beleive it is so important that people with diagnosed or suspected Behcet's are refered to the experts in Behcet's in order for a proper diagnosis to be made. Memory loss is such a big thing to happen to some one that it is important to rule in and tule out the causes for it.
We have been advised that our other adult children are seen to see if they are showing any markers for Behcet's and as i say it appears our youngest son showing several markers. It is interesting that your mother, grandmother and Aunt show lesser symptoms. When i was first diagnosed fifteen years ago it was said that their is no genetic link but the death of my son to the same illness as me has broken any belief i had in that old claim. I remem ber attending a Behcet's syndrome conference many years ago and there were families there who stood and said they had people in theire families with Behcets covering two or three generations. I also remember the first specialist i saw who told me because i was blonde with fair skin in could not have Behcet's (although my GP Dr Aley suspected i did) because Behcet's only affected people from Turkey. Professor Susan Lightman and Professor Haskard soon put that old myth to bed for me.
I strongly urge any one with Behcet's who are experiencing memory problems to print off the information on the Behcet's syndrome website take it to their GP or other health professional/s and insist on a referal to a Behcet's expert in Behet's nurological problems.
Thank you Kanjay for this blog
Debbee
Hi Sweet, my heart goes out to you.
I also feel there is a genetic link.
In my case it is not Behcet's but autoimmune diseases. I have two brothers with sarcoidosis and my mother has Hashimoto's disease.
As you seem to have had a lot of experience you would have a lot to offer to these new centers.
My Behcet's doesn't appear to be neurological but I have a severe case of the version that affects blood vessels (so far not major). They are destroyed deep down and slowly the body pushes the dead tissue to the surface - the ulcers take months to heal. I do have the memory loss and 'foggy brain').
Lesley
Hello Lesley
Thank you for your kind words, i always thought my children would be safe and always hoped my children would never show any signs of having Behcet's but to loose a child in his prime of life to an illness that has little or no understanding among the worlds medical professionals has been an experience i would never wish on any parent. Professor Haskard and his team were a major support before we flew to the USA to be with our son after hs diagnosis and contnue to be a dedicated support following our son's death as they understand the full gravity of the illness in some Bechet's patients.
I am sorry to hear about your mother and brothers anuto immune illnesse's. It appear to me to be that auto immune illnesses are of the least understood illness's and appear not to gain the understaning and investment among the medical world.
It always frightens me and makes me so very frustrated at the same time, every time i hear how a person has to fight to have their condition understood and how some medical practioners still remain to have little or no knowledge of Behcet's and can be very ill informed of how the illness effects the vascular systems both major and minor. Our son was treated at one of the worlds leading hospitals but it is without doubt that had Professor Haskard and his team not fore-armed me and my husband with information on the affects of Behcet's on the major vascular system before we went to the USA to be with our son the battle we had to insist on our son being tested, CT scanned, MRI scanned, pathogy tested etc then our son's symptoms would have been over looked and mis diagnosed as it was a common thought among the medical staff at this world leading hospital that Behcet's only effected the minor vascular system. Unfortuately treatment for our son's Behcet's started late and our son lost his battle against Behcet's and the mega complications Behcet's causes.
I too have Behcet's in my minor vacular system and i remeber a fews ago asking to have some very painful viens removed from one of my legs, Professor Haskard insisted i did not go through with any surgery as he explained to me that once the minor viens had been removed then i would be at risk of my Behcet's moving to me major vascular system, i had never given this any thought and nor did the doctors who wanted to remove my minor viens. The point for me was that although the doctors treating me for my minor vien trouble in my leg they would have removed the viens inocently not knowng this could cause me devestating problems later on, probably a DVT in my major leg viens thus placing me in a life threatening position.
Over the year many medical practioners have told me "we only get about 20 minutes dicusion on Behcet's or we only have one session/lesson during our training, yet the reason why so many people with Behcet's fight for years to have their illness either diagnosed or understood is because Behcet's is so very complicated and causes complications for the patient, therefore how can such a complicated and misunderstood illness only warent 20 minutes or a single lesson of training for anymedical practitioner. My point is that while Behcet's remains not to attracts it well earned place on the medical teaching programme for student and qualified medical staff, paitients with Behcet's will remain either mis-diagnosed, not diagnosed at all and probably considered a hypercondriac or placed at signficant risk. Added to this many family members and friends of Behcet's patients end up either thinking their loved is always saying they feel ill, tierd, exhausted, head ache, inflamed joints, eyes, ears, internal organs, brains the list goes on... therefore must be a hypercibdriac or more imprtantly the patient/person falls through the net and the consequences for the person and their family become devastating.
I empathise with you with your memory loss and the foggy brain. Have you told your medical practioner about your memory loss and foggy brain symptoms? if not it maybe useful to request you are seen by a nuerologist who specialises in Behcets or even if you already see a medical expert in Behcet's maybe they can arrange for you to see a nuerologist and then have any MRI or CTscans they may arrange to be forwarded to medical expert in Behcet's to have a look at to see if you are showing any inflamation or changes. I only say this as this is what Professor Haskard does with his Behcet's patients.
For many years my family told me to stay away from the US Behcets Desease website as it spoke about people dieing and people fighting for dianoses, treatment and care, they thought me viewing the website would cause me to be increasingly ill and frightened. My illness progressed anyway with out me looking at the website, my child became ill and died from the complications of this very misunderstood illness. I know i sound passionate about Behcet's and that is because i am... i am passionate about people getting the right treatment in the right way, the right recognition for their illness in the rght way, medical staff having the right training about the illness taught and delivered in the right way and given the platform it deserves for genetic research, treatments and social and emotional support to Behcet patients and their families.
Hi Sweet
Thanks for all the information. I will read it again and analyse it carefully.
So what you are saying is even if it is peripheral at the moment - be very careful what I do so that it doesn't progress to the major vessels?
I am seeing a neurologist who specialises in Behcets as well at a Dermatologist (both professors). I started off with the American Website but found it poorly managed (weeks or months between posts). My impression was the people on that website were inclined to whinge whereas on this website we are all sick but being a bit more proactive or positive (no offence meant to anyone reading this).
Speaking of whinging - at the moment my legs are extremely painful - any suggestions? I'm having a lot of trouble sleeping.
Is there any particular medication (e.g. methrotrexate) that you have found helpful?
Lesley
Hello Lesley
I think the USA website appears to suggest people moan but having experienced their health insurance system which is a far reach from our precious NHS i understand where they are coming from.
Unfortunately i had a sever allegic reaction to methrotrexate but have heard people do well on it. I prescribed it for my joints.
I am not sure if any one can prevent Behcet's becoming a problem in the mojor vessels, my son could not do any thing to prevent it. I just know that Professor Haskard made it clear that it was importeant that i did not have the minor veins of my legs removed as i suffer small blood clots in my smaller veins which are very painful, but removal of the viens would result in me running a huge risk of large DVT developing in the major vessels and removal of the minor viens would increase my risk of the walls of the major vessels becoming inflammed, thus sticky and possible DVT. i am best putting up with how things are rather then tampering and having them removed and increasing the risk of the major vessels becoming inflamed.
I expect you have tried just abut everything i am sorry if you have tried what i am suggesting but I have found placing a couple of pillows under my legs at night does help the pain. I am prescribed steriods which i take daily and use anti - inflamatory tablets and anti-inflamtory cream/gel prescribed for fleebitus,i take paracetamol and take prescribed colchercine.
I also have uvitis and have suffered optic nerve damage to one eye.I have tried many of the auto immune supressants but have been very uncesessful and tried etamercept but also had a severe allergic reaction and ended up in hospital. Sorry going off the subject...Back to my legs.... i try to put my legs up on a puffe when i am sat down and regularly move my feet, ankles and lower legs in order to try to maintain good blood flow. I suffer from large Behcet's spots which have scarred and these were originally isolated to my legs, they have now developed on my thighs, breasts, upper arms and recently developed on my face, neck and scalp.
I hope everything goes really well for you when you see the nuerologist and determatologis and hope both can help you, i am sure they will come up with some good suggestions and will set up a plan with you. Can i suggest you write down all your symptoms setting out how your Behcet's affects you and i hope you are taking some one with you, both for moral suppprt and also to fill in the gaps as you may forget to tell them everyting.
Debbee
Hi Debbee
Thanks for all your information. It does sound very similar to me. I've tried all sorts of things at night for my legs but must admit didn't think of putting a pillow under them.
I have reacted fairly badly to every treatment so far and possibly will be trying methotrexate shorly.
Will keep in touch and let you know how I go.
Lesley
Hi sweet, thank youy so much for posting this thread and I am so very sorry for your loss. Words I imagine cannot describe how dreadful an ordeal this must have been asd still is. I found your post to be very very helpful and I could empathise with you so completely that I rolled up and cried. You are an inspiration to not just myself but also my two boys whom also read your post.
Please take comfort in knowing this post has lead us to battle on and persist in finding out where the best treatment can be offered.
Many kind regards
Gisele and sons x
Oh my goodness I am so glad you shared this. I am so sorry also for your loss. I am newly diagnosed but have had bouts of illness for 17 years, of course everyone thinking probably just crazy. It's amazing all the crazy people out there that want to be sick! How frustrating... My son is 14 and I think may be showing some symptoms as well as my daughter who is 10. It scares me to goodness to think about it, but motivates me to figure things out with me for them just in case.
When do we know BD is changing to NeuroBehcets?
Dear Sweet; May God Bless you, and after so long, are you able to respond? My Son has same problems, he is 29, sudden Neuro Bechets attack, after 5 years of B.D. Syndrome no doctor understood, Nov. 2017 he had Neuro lesions, Hem-ataxia, speech severe affected; eye, possibility of Optic Nerve atrophy, and clot in left eye, permanent blind...I am so very scared for our son CNS Involvement, please do respond, my email is sghuttora@shaw.ca, I wonder what my son will have in future....God, bless each and very person here, I feel for all of you..thanks you Sweet1 and all for being here..I hope someone is reading this, and make me understand more, what is in store for us to help our son with his CNS Involvement...
You don't know how relieved I was to read about your memory loss! Not because I'm cruel and wish you ill, of course, but because I was beginning to worry that I was developing Alzheimers.
Up until quite recently I was a writer; words were my stock in trade. However, nowadays, I just cannot bring the right word to mind and sometimes the word that comes out instead is a totally rubbish and non-existent one. I've noticed too, although, nobody has commented on it so far, that when I speak I sometimes miss out syllables of a word. This is very new but doesn't worry me quite so much as my loss of words does.
On Friday I'm seeing a new consultant. Up until a couple of months ago I was seeing a consultant in Bristol who was brilliant. Bristol is a 2 hour drive from me and my local hospital is just ten minutes away. Five days as an inpatient recently though made me realise that its better if you can have all your medics under one roof. Perhaps I'm being too hopeful in hoping that the new man will have all the answers. However, sometimes just looking at a problem with new eyes can help.
Hi Kenjay;
Behçet's disease, eye, Central Nervous system, consisting of the Gastro Intestinal System, Tissues, indicating that the disease may cause loss of memory, looking different cases. The plant affects the nervous system, due to have this in Turkey and all of your facts. Behcet's patients for some Kenjay endeavor I want you. Very close to the beautiful days of life, spiritual structure to empower us all friends; Starlight of love, happiness and peace of mind;
See you soon;
Hi, I am so glad that someone has posted up about memory loss, as it's something I've suffered from the last couple of years, so bad that a lot of my memories of older stuff is gone and it can be that bad that i can be told something then a few days later forget what was said. I always thought i was maybe being ignorant and not really listening to what people were telling me, and that's the reason i was forgetting stuff so easily. It worries me more now as i have a 17 month old daughter and a lot of things that's happened in her life so far is hazy and a blur, and that has got me down a bit. I've never been sure what to do about it and who to speak to about it, any suggestions?
Thanks Steven
Hi djhamilton
It is worrying about the memory loss and so important to get it looked into especially as you have a lovely 17 month old daughter and should be properly enjoying it, instead of worrying about it.
You don't say if you have a regular consultant for your behcets and really need to be seen by a Neurologist who has experience with behcets.
I am not up on the medical system in scotland so not sure about access to the new centres of excellence in England. The Behcets Sociiety helpline may be able to help you with this.
Hopefully someone will pick up on your posting and suggest a good consultant in Scotland, for this.
Otherwise, I suggested in the postings above to copy the info from the link about behcets and memory loss behcets.org.uk/menus/main.asp
You can take this to your G.P and ask for a referral.
Hope this helps a bit - let us know how you get on, if you like
Andrea
Hi Andrea,
Thanks for your reply, as regards to a specialist, I see a doctor at the Maxillofacial department, who I've seen about my Apthous Ulcers for many years, he was the one that diagnosed me with Behcets after going through many tests and after speaking with a specialist in America, and he's the one that supplies me with my medication for the ulceration, which is Thalidomide. I see a neurologist about every year as I also have peripheral neuropathy, and I have that checked to see if it worsens, as it got quite bad a few year back, but it has stayed stable over the last few years. But other than that I don't see a specialist in Behcets, as I'm not sure if there is one up here. You seem to have a lot better facilities down in England, with the centres of excellence opening up, it would be good to see one open up this way too! So do you think it's worth going to see my G.P and being referred to see someone?
Thanks Steven
Hi Steven
It always wise to get these things checked, especially as you already have some neurological symptoms [peripheral neuropathy] and behcets. You never know there may even be a connection.
I find that the more I worry about a symptom, the worse it gets and stress definately has an effect on behcets.
You seem to have 3 or 4 choices to me
1. Ask your Doctor at the Maxillofacial Department to refer you [they may even know of a doctor experienced in Behcets]
2. Contact the Behcets Soceity helpline on 0845 130 7329 and ask them if they have a list of Neurologists in Scotland
3. Ask your G.P to write to your Neurologist that you already see, for a new appointment outlining in the referral the additional problems you are having with your memory.
4. Put a seperate new question on this forum to see if someone else out there has a neurologist that they see for behcets.
You may have to push a little bit, before you find the right help....hope this helps
Andrea
Looks like I'm just adding to what everyone else agrees with. When I'm having a flare (which is often) I'll be talking and half way through a sentence I'll forget what I'm saying (fortunately most of my family and friends know me and just remind me what we were talking about).
It's interesting that I'm having this problem but apparently don't have Neurobehcets.
I definitely get the 'foggy brain'. The other big thing is it is a general feeling of exhaustion and 'can't be bothered' or don't have the energy to sit down at the computer and work. I notice that another patient is a writer - that is my line of work too and basically I just have lost interest, but have to force myself because 'I need the money'.
Lesley
Hi lesley
I think a lot of people and doctors underestimate the effects of the fatigue that you get from behcets.
I was diagnosed with chronic Fatigue syndrome well before I was diagnosed with behcets.
I too love writing, but have to pick the time to do it. If try and I force myself it is like trying to think through treacle and makes my fatigue worse.
does this sound familiar?
Andrea
Hi Andrea
Certainly sounds familiar. I was going really well for a while - getting up very early and working from 5am for a while (sounds strange but it worked). I've been taking sedatives at the moment so find it hard to get up.
Regards Lesley
Hi Andrea,
I have my appointment next month with my doctor at the Maxillofacial department so i will talk to him about it and see if he can help, if not i will see my G.P. and I'll take it from there.
I will keep you and any other who is interested about this post up to date with what happens. Thanks for your help and kind words so far.
Thanks Steven
Hi Steven
That's great having a plan of action as this will help you.
You may have noticed that someone else on this forum has asked the question about Behcets Specialists in Scotland and access to the Centres of Excellance in England. It might be worth keeping an eye on this question or even joining in.
Good luck with everything
Andrea
I saw my new consultant this morning and told him about the memory loss - I hadn't spoken to the GP about it and my appointments with my old consultant were so chaotic that most times were were just firefighting.
Anyway, he told me that neurobehcets is accompanied by a change in consciousness levels. I reminded him that I am sleeping my life away at the moment and can fall asleep in a split second. His response was that as I was obviously speaking to him coherently and was 'present' that I don't have neurobehcets. Also he said, my headaches would have got worse with neurobehcets.
So now I'm scared of alzheimers again 
Hello devonshiredumpling
Has your consultant suggested he arrange or a neurologist in behcet's arrange to carry out a MRI or CT scan of your brain?
I agree neurobehcets is accompanied with a change in consciouness and chronic headaches. During a neuro behcet's brain flare i could easily cut my ears off and pull my teeth out and the headaches are so chronic i cannot lift my head from the pillow and when i speak i make little of no sense, is my hands shake uncontrolably, my swallow if effected and i bump into things, fall of chairs, walk into door frames and the flare can remain at a chronic level for days then slowly subside to a intense headache that lasts for weeks.
You make an excelent point about the conscious change in the need to sleep as in my experince nuero behcet's causes me to sleep at any time of the day even if i have slept all night i just experince an over whelming need to close me eye's and sleep.
I started to show signs of nuero behcet's 10 years before i was diagnosed with behcet's the signs of my neuro behcet's 23 years ago were very suttle back then but nontheless significant to show changes to my nuerological functioning, it is only all these years on that anyone can tell even from first meting me that i have nuerological problems. .
Please do not be detered. If you or/and family notice a change in your condition then keep telling the medical people this as it will normally mean simething is going on somewhere in your body. Maybe speak to your GP or consultant again because either way if you are experincing changes the route cause of these changes need to be identified so that you can be made aware of anything that is causing you difficlties and a plan and treatment regie can be provided to you necesarry.
I wish you all the very best.
Debbee
Thanks for such a supportive reply, Debbee; I will certainly do as you suggest - and let you know what happens.
Best to you too
Di
Hi Debbee
Apparently with Alzheimers you aren't aware of the onset - so if you are worried about it you probably haven't got it. It is probably all the drugs and also the Behcets. I've been told I haven't got neurobehcets (and got a good report mentally from the neurologist) however definitely get the foggy brain and memory loss and he agreed with me that I did have those symptoms. My theory is the brain vessels get inflammed and cause the problem. Years ago I got a bad case of the flu at work and argued with the bank that I hadn't been in the day before and made a deposit. They dutifully got out the deposit slips and showed me my signature (which was very embarrassing). At that stage there was no hint of Behcets. So what I'm saying is you are probably just having a flare.
Lesley
Thanks for that Lesley - certainly the drug regime is a bit on the heavy side at the moment. Well, it always is, just more so right now!
Hi Kenjay
I've just come from a visit to the hospital today. Apparently some of the drugs cause cognitive problems. It was interesting that the doctor mentioned that is shows up when patients play scrabble or do crosswords. A couple of times in the past months I've misspelt words, I know something is wrong but can't think of the right word. Later I look at it and instantly pick up the mistake. It is only very minor but very embarrassing as I train secretaries on how to spell medical words.
Regards
Lesley
Hi everyone
Someone mentioned the fact that there was no support group north of the border. A group has been set up recently If you want further details contact the Behcet's Syndrome Society and they will put you in touch.
Regards
Fortunate
How;s this for an illustration?
I began reading this thread about half-an-hour ago and thought how interesting it was and wondered how I could have missed it.
Then I found that I had actually contributed to it!
Oh, dear...
I know what you mean Di
I am doing it all the time....this thread takes a lot of reading and concentration...so we might be forgiven.
Sorry to read all these mails folks, it is a tough disease. I have issues with speech and memory loss despite not having technically being diagnosed with neuro BD. I have hearing issues and bladder issues and have had aggressive eye uveitis. People think you are being silly when you ask for things to be repeated and when you forget things, but hey, keep smiling, it is all we can do.
Tim X
Anytime a doc says “definitely not” in regards to Behçet’s I start doubting him.
