Dr's: I have come to a inclusion the bechets... - Behçet's UK

Behçet's UK

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Dr's

pete11
pete11

I have come to a inclusion the bechets doctors don't really know what there talking about. I waste my time travelling to and from Liverpool center of excellence. I have bechets for some time know joints are completely shot to pieces mouth ulcers genital ulcers skin problems I have also lost all my back teeth due to a problem called ONJ which means my jaw bone are weak and fallen apart with a extremely painfull jaw some times meaning unable to eat. I have type 2 diabetes witch is so out off controlled due to prednisolone some days after 33 units of insulin my blood glucose levels are above 34mmbol. Migraines are delbritating and all the dr says is morphine is making my migraines worse and my fiybromyalgia will get better on gabbepentine. Well let me tell you Mr Dr no not much I am a 31 year old with 4 kids and a wife who cares for me I'm in total agony 24hrs a day cant go shopping cantrip walk to pick my young kids up and feel like I aint got much to live for. I have to move out my home because it is not safe because me keep falling over and no way the house is safe with my mobilty. 31 years old and occupational therapists can see how i stragle around my family home sleeping down stairs without my wife off 11 years it is so said. My pain is getting worst I'm on 1000th pregabalin 160mg morphine plus oral morphine for breaking threw pain. Also on stuip amounts off other meds plus azathioprine and entacept injection. Dr's just donthe know much about bechets and in my eyes and believe they are just playing Russian roulette with our lifes. Sorry for the rant just fed up wasting time keep running form on specialist to another with no answer. They blame this med and next breath blame this med. If prednisone is so bad why do they help in flare ups.

18 Replies

I feel you and I know what you are saying. Liverpool gave me no help , I use to travel from Llandovery in Wales. They talk the talk but have no idea really what this does to are lives. I don't know how you are going to get some relief but I pray you do. I know what it like to have no life with this .me and my children have Behcet's. My thoughts are with you.

pete11
pete11 in reply to Dawn_Dighton

Hi dawn thanks for reading my post. You mentioned you used to go to Liverpool where do you go now?

So sorry to hear your not getting the help you would expect from CofE, my daughter sees professor Fortune in St Barts CofE in London who we are very pleased with, is it possible for you to have a referal?

pete11
pete11 in reply to tamirra

I would love to but London is 7 hours away from me and my body just cant do that long

tamirra
tamirra in reply to pete11

Oh such a shame, can you not change consultants in your clinic?

pete11
pete11 in reply to tamirra

I am going to try I'm up there very soon. It seems like no one listens to us. I understand it is a rare diease and not well looked into but we need some kind off help. I am happy you have a great Dr in London. If you dont mind me asking Can I ask what meds you are on?

tamirra
tamirra in reply to pete11

Good luck. It's my daughter who suffers not myself, I can text her and ask if you like. I know she is on Azathioprine, propranalol, b12 injections, folic acid, iron, calcium, not sure if anything else so will ask

tamirra
tamirra in reply to pete11

I've asked her and she is taking the meds I said, irs only the Aza and iron for her actual illness the rest are because her diet is not good and propranalol is for her anxiety x

pete11
pete11 in reply to tamirra

Thanks Tamirra hopefully I get some answers when I go back to Liverpool.

tamirra
tamirra in reply to pete11

Yes I hope you do? Please let us know x

I agree with you about the Liverpool COE, My son also has Behcet's but did develope a rare form of Leukemia that was thought to be related with his BD he was really quite ill.

His consultant arrange for him to make the journey to see the professor and the BD team at Liverpool, because he was very ill and needed blood transfusions his mum and my son arrange to travel up and stay over night at great cost. They made sure the prof and his team would be there and it was confirmed they would be.

They stayed the night and the next morning went to the clinic only to be told the Prof was out of the country so my son had to see the other team. The ophthalmologist is one of the rudist doctors we have ever seen, when he examined my son in their eye test he belched right into his face. It was souch a waste of time and money going to the Liverpool COE and he said he would never go there again.

Paul_E
Paul_E in reply to clocktower

Hi, I am really sorry to read about your experiences with the Liverpool COE. After the numerous hours spent in front of multiply Opthalmologists I do really understand your anger at the treatment.

As I said in my last post I attend the COE in London, and I also travel a long way across the south of England so would be extremely, to say the least, annoyed with that treatment.

What I would suggest if you need some help is contact the London COE - all of the staff are excellent and the lead doctor, Professor Farida Fortune is excellent. She has really helped me through this illness. It is a long way to go but they are great and it feels worthwhile.

I genuinely hope you have better treatment in the future.

I will mention about the treatment you have received to her when I attend her clinic next time.

Take care, Paul

Hello Pete,

sorry to read your struggles with our lovely condition!

I am 49 and was diagnosed in the late 90's following multiple flare ups of Uveitis leaving me virtually blind in my right eye and reduced vision in the left whilst serving in the RAF.

I have, and still am suffering with most of the known symptoms of the condition so do fully understand you frustration and troubles, and I really do appreciate your feelings as the condition has cost me two marriages and a good career in electronics, and a lot more.

With regard to Prednisolone, it is very good for reducing inflammation and so can be very good at helping reduce the symptoms of our condition. Without Prednisolone I would probably be totally blind. However, the side effects can be quite severe so it is a case of weighing the pros and cons of the treatment. For just one example I put on two stone in the first two months of starting this treatment, and have now been taking it for more than twenty five years with the dose varing between 10mg and 100mg daily, so it can be tolerated by some people.

With regard to the doctors and their knowledge of the condition it has come a long way since I was first diagnosed with this very complicated condition, and I think everybody concerned is still trying to fully understand the condition. I attend the centre in London and find their care and treatment to be very helpful and I am very grateful, and they are constantly trying to find suitable new treatments.

I genuinely do hope things improve very soon and wish a the best for the future,

best regards, Paul

sorry did just 'like' the things posted tonight - it doesn't quite seem the correct response! I will say I am disappointed with what appears to be the Liverpool coe as I have wanr=ted to, and still have it on my 'bucket list I want to get to Anfield!!!!

All of you take care - it is not easy coping with this

Research LDN. It may mess with some of your meds so do your research. I have Behcets and Fibromyalgia. It’s no fun I know. I’ve been using LDN for about 3 months now with some good results. I agree with you that doctors know sweet FA about how we cope. I have got to the stage where I take very little meds. I’m so sensitive I can’t handle the side effects. LDN has reduced my pain and increased my energy levels. Don’t give up x

Hi Pete and all other poor souls who are really struggling with the treatment side of things.

I guess what i am about to say applies to all very rare conditions that are hard to diagnose and treat so hopefully will help others as well as BD sufferers.

The first thing i would say is that this is not excusing any bad experiences any of you have had at the Cof E’s or from any of your clinicisians okay? I’m on your side and we are all in this nightmare together!

I have been diagnosed with BD now for around 15 years after a life long of weird things happening to me including cancer and losing the sight in my left eye suddenly driving round the M25 one morning in the rush hour amongst many other strange things. Lol i now have Psoriatric Arthritis, Oesteo Arthritis, Liver Cirrhosis (non alcoholic), partial hearing loss, Diabetes ll, severe Tinnitus, Gastrittis and Ulcers in my stomach and intestines, damaged Joints and have no feeling in my hands now whatsoever. I now need to use an electric wheelchair full time. These are the main complaints but as all BD victims know, others come thick and fast and change all the time.

What i have learnt is that the people that treat us, particularly in the C do E’s work very hard to help us and it takes an awfully long time for them to figure out which drugs help or hinder us and it is all trial and error regardless of our expectations. We would all love to go along to see the experts and get an instant diagnosis and told to take, A,B and C and things would get better but it simply isn’t like that as we have all found out.

My tip starts with ‘Keep The Faith’ and eventually they will manage to help you but it can take an awfully long time to figure it out, especially in the short time of an appointment where they have to gather their thoughts on your background so far and then talk to you and form a plan to go ahead again. Brilliant though all of our medics are .... they are only human and can only work with the information they have and need to work quickly with each client during a clinic where quite a few of us gather all at once.

So, ‘Take Responsibility For Your Own Health’ which is something that sounds so simple yet is crucial to coping with a condition like ours. By taking control i mean helping yourself in any way you can to drive your diagnosis and medication control forward to help the medics do their job. Try to find out what you can from all the sources available to us but keep an open mind to the fact that some of the information can be incorrect and deceiving. Try to relate your own unique version of this condition to the information you find and make notes for your own records as well as putting precise points forward to your health givers to check them out for your own circumstances.

This is an ongoing situation which constantly evolves as your needs change so be prepared to become a researcher for your own benefit. Note the things you can write off as not applicable to you as well as this will help eliminate some things which your medics can do if your tell them about it and helps to drive the right path towards your individual pattern of Behcets and we are all totally unique!

Before you go to see your specialist, prepare a short summary of what you have found out and any questions that you have raised relating to your condition. The BSS are a wealth of knowledge! I do a small Welfare Report which i give to the C of E manager and specialist nurse who can then direct you towards the best person to see in clinic before seeing your usual consultant. I find that by summarising what has happened to me since my last visit, my consultant can get a good idea of what has happened to me and any urgent things that need to be addressed straight away which has proved very useful to him to take my treatment plan forward. I also find that pulling one of those medical diagrams of the outline of a body from the internet is very helpful to illustrate where exactly i am having problems and backing this up by saying what they are in my summary has more than once proved vital to highlighting a problem i wasnt aware of. You can just draw a general outline on a piece of paper to do the same thing if necessary. Lol.

All this information is scanned onto your medical record and forms a good historic record of how your health is going and what has helped in the past and what can be ignored as the consultant tries to progress your treatment plan.

Don’t forget to include any mental problems that have materialised as these are also very important to be recognised as a symptom of what is going on!

Include in your summary what specific points you want to be answered by your consultant when you see him. By identifying specific questions he can answer will give you a better understanding of what’s actually happening to you and also how he sees your condition being treated as an ongoing thing.

Try to stay positive and share your thoughts nd symptoms as well as your successes of getting them treated with other BD sufferers and read what they have to say as well. The people who use BD forum sites are the people who know what is happening to you best of all as we are all in the same boat and you will find some very helpful people as well as making some special friends as well. Family support is brilliant but they will struggle to fully understand what you are going through. We know and we understand.

A close friend told me recently that she had been to a pain management clinic and one of the big tips is to try to find something that distracts you from the pain. They mentioned doing puzzles which occupies the brain away from the pain. I find painting watercolours helps me tremendously. I’m not an expert but i do enjoy putting brush to paper. Lol. I also write poetry which tends to help me with the darker side of thing and i can say what i feel and even confess some of my darker thoughts and be able to go back and read them again when i feel down.

I guess what i am saying is to try to make the best of the short time we all get with our medical support staff and we must give them as much precise information about ourselves and what is happening within the tiny amount of minutes we have with them each time so that when we see them so we can get the best results out of them. They are only human and have off days as well! Do what you can to help them do their job for you!

I hope you manage to get better help in the future and get your BD under control asap.

Take care everyone and share with your BD friends okay? Mwah !

Incidentally, my consultant is the fabulous Prof Moots who diagnosed me (with my help) and has treated me for 15 years now. He is the most approachable and nice person i have ever met in a clinical situation and i trust him with my life every day. Lol. He has taught me to help him and it works. I’ll tell him he owes me a fiver for the reference. He will like that! Rofl

X xx

I too can sympathise, I was diagnosed at Birmingham CoE with incomplete Behçet’s in 2016, re-referred in 2017 as I have terrible scalp lesions, local hospital dermatology eventually after biopsies called an MDT OF 10 dermatologists, they concluded it was Behçet’s as one dermatologist had seen this before. Referred back to Birmingham as local dermatologists concluded they’d be more experienced in lesions. After a failed appointment in October (Behçet’s dermatologist was ill) I was seen in November, apart from professor Murray who is a really nice man. The others were a different team. Despite increased ulceration and the oral doctor asking me to send her pictures by email so they could build a database for GP’s - they reported 4 weeks later my ulcers were not Behçet’s related.

Now.... I wasn’t seen by a rheumatologist , last time Dr Caruthers examined me and he is very competent.

My eyes were unaffected so the ophthalmology report was neutral as last time. So the oral doctor and a dermatologist (who wasn’t any help at all) decided I wasn’t now suffering from incomplete Behçet’s!

Well my local rheumatologist who knows the centre manager and dr Caruthers personally stated in May that despite the CoE report she was continuing to treat me with Behçet as she was very experienced and 100% states my inflammation is Behçet’s related. I get ulcers every week treated with steroids and now 1000mg naproxen to see if my inflammation is reduced.

I feel for you, pity you can’t get a local rheumatologist to treat you.

I was very supportive of the CoE efforts in 2016, but since it seems they’ve lost their way, the amount of referrals is ludicrous seems they are encouraging the GPS to refer everyone with ulcers to the clinic to ensure they are deemed an essential service and thus receive funding.

I was made to wait after I’d seen the dermatologist for hours, by the time I saw the oral doctor who had a cold - I have other conditions and was conscious of not wanting her germs! Anyway I was so tired, and ill I really can’t remember what she was asking - I had an head injury in 2014 which affects my cognitive ability yet this wasn’t even taken into account that waiting for hours not only affected my severe pain but my answers.

Here is New Jersey/ New York City it took a long time to even diagnose it. I have not taken meds in a couple years have little flair ups. I would say WATER helps me alot but i mean ALOT of water when I get lazy I get flair ups. Also diet anything can cause a flair up so I eat MEAT only for a week so far I feel amazing and my eyelid inflammation has gone down for the first time in yearsss. Theres alot of misconceptions about meat in todays society. In america atleast. Look up Carnivore diet Im on week one I'll update if anyone wants to know how I'm doing.

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