Hi I am one of the patients who nobody wants to help, I'm in between departments all saying its the other person's remit! In fairness to gastroenterology they did colonoscopy 2 years ago & recent endoscopy just reactive gastritis but no IBD. I already had full review from Dpt Tropical Disease & Infection who at the last stretch diagnosed Obstructive Sleep Apnoea (now on treatment Cpap). I was told it was highly unlikely also, so you can understand my distrust of professional opinion of those who don't follow criteria. Luckily this Dr used criteria. The suspicion of cfs/me was dropped.
After 6months gradual improvement went to gradual decline with clear episodes of new inflammatory signs.
Red painful joint swelling, random migratory. Knees knuckles big toe joint. Also hot burning red painful soft tissue swelling around joints. Red sore eyes, dry eyes now gritty, severe dry mouth at times. Episodes of painful but mild irisitis (unconfirmed as eye emergency closes at 4pm) photos of redness and excruciating eye pain on any light. Esr high in connection with joint swellings. Photos of joint swellings also. I've suffered oral ulcers for years but episodes coinsided with joints and eyes and pustule outbreaks. I had adult onset pustules at a time when I suffered from mild fatigue and terrible severe mood swings every 30 to 60min in most afternoons. I also got sores around genitals never looked just felt sore. Back then I never bothered doctors unless really needed to. I never had this type acne as teenager. Neck; chest; back; bum; shoulders & now arms!
My severe fatigue started 9 years ago but took on a new severity after c section 3.5years ago. Pain has become massive issue last 3.5years. Diagnosed prior to OSA treatment as fibromyalgia with polyarthralgia; migraine which is now chronic daily headache. Balance issues brain fog; profuse sweating; chronic low grade fever. Now 14. Episodes of ulcers in 9 months.
Sorry to go on, just trying get you understand. Chronic palpitations; nasal drip; ENT thinks chronic tonsillitis., currently under control mostly. Mri was clear. Get infection after infection became severe lymphopenia 0.3. Iron deficiency despite no periods due to coil. Believe bowel blood loss. Had told it was Ibs. Loss appetite, nausea, binge eating; Bloods since new symptoms indicate possible autoimmune.
Problem is rheumy is Horrid, not interested in getting bottom of anything and just wants close my file. Thinks I'm not ill enough. Tells me I have no severe life threatening illness! Had low levels lupus anticoagulant, slight elevated drvvt after ibuprofen so may have been higher. Strong history on both sides clotting problem with heart attacks & strokes early onset leading death & disability. He wouldn't even diagnose costochondritis my gp had to. When I asked about rib pain he shrugged! When I asked comment he said we'll yeah all muscular rib pain is costochondritis!! Doesn't look at numerous rashes properly on photos Denying they purpura saying they are raised when clearly they not raised!
My recent Bloods to confuse things showed normal calprotectin! Although the flare was minor no sore tummy just urgency. Raised creatine kinase. Again rheumy say not significant.
Sorry point I'm trying to make is he won't apply criteria. In spite of all evidence denies anything rheumatic wrong with me! Even Immunoglobulin a elevated. My gp given his advice won't refer me to specialist as too much money! Even oral specialist who was lovely said not behcets it's rare. Without genital ulcer you don't have it. Cfs/me push me to get diagnosis as my symptoms suggest inflammation.
Im in dire situation no real support. Husband works full time & looks after toddler, struggling. All family at big distance. Not many friends left & often no energy to see the odd ones left. Gp works with me but seems trust rheumy opinion over mine. I can't live in this pain. Rheumy letters are inaccurate and gp refusing my corrections. Rheumy won't make corrections that I require despite evidence that its wrong. He only added the rest of medication and diagnosis he missed. He lies denied ulcers were a problem in his letters! Now says I had one genital sore with out referring to my history of them at all.
To be honest I don't know how much more I can take. I'm never seeing him again. If I confide in husband he gets depressed which then upsets me. I so isolated. Got pip Tribunal coming up & social assessment result is they cant get me help with Joseph either as I don't qualify I have a car. I don't have full access & regardless of car still in significant pain. & often too ill to drive him to nursery.
Im so sorry to have gone on so long. I'm just despairing it sometimes feels be much better if I didn't suffer. A life of pain, burdening my family and all alone with no help just doesn't feel like a life I want. I know we all suffer and I'm not doing anything about how I feel but I just pray the suffering will end. It's constant pain
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Have you looked into getting a referral to a Behçets Centre of Excellence to consider a diagnosis? In the car now so can't write much, but do a search on here and the Behçets Syndrome society website. Your GP can refer, doesn't need to be rheumatologist. Won't cost the GP practice anything as it's nationally funded. Start keeping a symptom diary and take photos of all lesions, ulcers and swellings. Diet can help but not everyone. The right drugs help many of us. Sending love, I was fobbed off with CFS diagnosis many years xxx
Thankyou. No one will consider behcets centre of excellence! Not even gp. Gp told me it costs them more than their usual referral fee! She told me not free like I'd suggested so I'm confused now. All involved refuse to accept the evidence as evidence! Saying adult acne and ulcers common! My red painful eyes are not red enough. My chronic headache migraines are just that. Even now refusing to believe I have gastro blood loss despite the evidence they found! I'm dumbfounded. Refuse to consider that the esr high elevations mean anything. Or the lupus anticoagulant or the Immunoglobulin a or the creatine kinase. Not even mentioned the likelihood of sticky blood. I'M STARTING TO THINK IT'S A CONSPIRACY! They got no money to treat you unless you are in A & E about to die! Then they have no choice. They can't diagnose you but then tell you you're not ill enough to treat so they just refuse to diagnose. Xxxxx
Just wanted to say how sorry I felt for you after reading your post. To a certain extent I felt I was reading mine from years ago and I'm sure a lot of other sufferers (good word to describe it) can empathise.
Just be very determined to get to the bottom of this. At least you have the CoEs in UK - in Australia and a lot of other countries we are dependent on individual specialists, although we have the option to shop around as we are paying (often dearly) for the consultations, unless we go to a public hospital.
If you could find someone though this group of a similar age and set of circumstances to support each other - I have found this a tremendous help. And that is one of the questions asked by health care professionals - what support to you get?
Thankyou such good idea, we all need support. I don't understand why we are all treat so badly. You're right we are lucky enough to have centres of excellence. Though it's so ironic though when referrals aren't made regardless of fitting criteria!!! Thank you for your kind words xxxx
It is really tough when we go for help and come away with none...it somehow makes things feel worse. Click on name above to find out my experience which was similar.
Just keep going. Avoid tea coffee and booze...uhg..
As a friend said to me..if you want something done. Do it yourself.
Toolkit of helpful stuff ..soda water..anti acid tablets.
I'm so sorry for your suffering. Hoping you find a new doctor who can help you. Persevere and keep searching for answers, try every diet, see every doctor, read every book. Don't give up! We're all rooting for you.
Thank you so much. Now my creatine kinase is highly elevated 1300 again he saying doubt it significant! I think gp get me seed Griffiths Newcastle. Suppose to be good with inflammatory conditions. Thankyou xxxx
Are you in England? If so, then your GP is simply wrong. It will not cost him anything to refer you to a Centre of Excellence.
When I was seeking a referral I rang my nearest CoE direct. They were very helpful and understanding. Perhaps you could try this? They might have some information they could send your GP to clarify things.
If you go to the Behcets Syndrome Society website behcets.org.uk and click Contact you will see contact numbers for the London, Birmingham and Liverpool CoEs. Try ringing the Nurse Specialist at your nearest one.
Thankyou, I will do this. Though I think because lupus anticoagulant in low levels has shown up once she is convinced it's more likely lupus or sticky blood. I had rib and chest pain around the time I had high CK elevations which might indicate myositis. I'm not sure but think lupus can present like this. Do you know if behcets can? Xxx
One of the hallmarks of Behçet's is the fact that nothing much shows up in the blood, apart from the occasional raised ESR in some people. However, co-morbidities with other auto-immune conditions do occur.
With ulcers, joint pains, skin lesions, headaches and eye problems occurring in a pattern of flares you would, in my humble opinion, have very good reason to request a referral to a Behçets CoE. It is your eye involvement that concerns me most. If your eye problems are BD related you need them thoroughly assessed ASAP. At a CoE you would be seen by an opthalmologist with experience of BD.
But do give them a ring. I am sure they will have come across cases like yours before, where there are a range of BD symptoms with bloodwork hinting at something else in the mix, so they will hopefully be able to advise.
Thankyou, it's reassuring to know that I'm not going mad. Sometimes you think it's so obvious why can't they see it? They clearly intelligent so it must be me overreacting. Then I start thinking like politics, money, a lack of understanding of the pain. So unless they actually see bones crumbling, bleeding etc... They just think you're a wimp. Then I think and worry about the damage that could be happening eg like my eyes or heart. Then I get angry because they have this knowledge, it's their area but they simply choose to ignore you, because they can't be bothered putting in any effort. It doesn't interest them. I'm so despondent. I'm so scared that all the Dr's will be the same. And want give up and accept my fate. That's kinda what I've been told to do! "You spend so much time focusing on your health" he clearly didn't understand I am just surviving & fighting to keep alive. He practically said as much! "you do not have a life threatening illness" yes you suffer from fatigue & are unwell but their is nothing pharmaceutical I can prescribe you to help. So in his own words, unless you're about to drop. Dead I won't treat you.
Am sorry to rant I just astounded. To think so many Dr's just do not care. They simply want fancy cars & told how clever they are at research.
Try emailing one of the Bechets Centre of Excellence with all your symptoms like you have described on here and they may agree to see you as someone on one of these sites has done it before and they agreed to see her you never know they might see you good luck Hun xx
You are not alone. Many of us have run the gamut of medical professionals being unresponsive to the effects of this illness. Studies have been done quite recently which have placed its detrimental effects on quality of life on a par with illnesses such as RA, MS, Crohn's and lupus, but we don't have the support networks and general understanding that surround those less-rare diseases.
There are a lot of medicines that can be used to treat Behçet's. Colchicine is usually the first to be prescribed, as it has good results for many sufferers.
Many doctors can be unsympathetic. It is almost impossible to emotionally engage with the plight of patients when they are being seen in 5 minute slots like chickens on a conveyor belt. But that is no excuse for being callous and misinformed. 'You spend so much time focussing on your health' is a snap judgement and the sort of protoparental attitude that has no place in modern medicine. I am sorry you have been exposed to that sort of behaviour. There are some good guys though. Don't let the baddies grind you down!
I have stopped expecting doctors to give a monkeys about my personal situation. That is not their business. Their business is controlling the disease. If they do their job properly, my life will improve, but that does not make them magicians or gods. They are simply professionals providing a service which we are lucky enough to get for free. Long may that continue.
As in most exchanges with professionals, clarity is key to getting the job done quickly and effectively. Keeping notes and taking photos of my ulcers and lesions helped them give me an immediate diagnosis on my first visit to the CoE.
Hi I agree I didn't expect him to care but I thought it would demonstrate to him how unwell I am as my arm is not hanging off. I can't believe in this day & age in a so called civilised society we are treat this way.
That's another thing the detrimental effect, proof of reasons to treat. He doesn't say to his RA patients its not life threatening so not going to give you medicine.
Im also happy for him not to engage, just want him to do his job. For eg today my 2nd CK was high 1336 and a liver test was also. His opinion is it may be myositis but it's not important to do anything about it. It's only worth treating when it reaches 8000!! I get a monthly test, lucky me!
He get negative blood results & states see there's nothing wrong. Then he sees the positive results & says its a red herring if anything wrong with you we would have picked it up in last year or 2. So every positive result is insignificant & every negative is important. Now it can't work that way! Surely. Finally he admits I might I myositis but even that's not worth any help. It's truly going to be that something bad is going to happen to me before I get any help. But then it might be too late.
To me though, I disagree, they hold lives in their hands. They have the power to sometimes help give people their lives back. I realise not always.
I have always agreed we are lucky to have the service but you must remember we do pay for it in taxes. And when the service provided is inadequate due to many reasons like my & many others cases. I have to say there truly is no service at all.
I keep notes & he moans about the fact he has to read them. Then lies & says he has read with a smug smile when it then becomes evident he hasn't!
I show him photos that he doesn't look at & ignores. When he does look & doesn't know what it is he shrugs & doesn't care.
He looked at pustule on my arm & said it's definitely not behcets. I know you cannot tell by looking! It's like a power game to him that only he can win.
It's worse now because my GP lied to me, she didn't put the referral in to Dr Griffiths that she said she would! Her excuse was the wait. I said it's clearly an inflammatory problem so I need see someone who specialises. She was more bothered about offending him than getting me the right help! She said she would send a tactful letter asking him if he thought Dr Griffiths would be able to help. I believe she already put that to him on the phone when discussing CK results & I know his words will have been "they would say the same as me" he has said this lots to me. How he can make such claims is beyond me. I mean why else would she be so happy to refer to Dr Griffiths and now suddenly not!? He apparently holds all the answers even when he doesn't specialise.!!!
I'm astounded but my GP doesn't want appear rude or go over his head. He has all power. I show him behcets criteria he shrugs!!!! He tells me & gp I had 1 genital sore when I have told him I had history of them. I could scream with despair. Sorry am ranting but I truly feel the service I'm currently receiving is sending me to an early grave & I am going stop trying soon as I can't take much more.
I thank you for your support it does help me feel less alone. I could probably about handle the battle if I had a friend family or husband to support and comfort me, but you are my only emotional support on this site; all you guys is all I got. For that I'm grateful xxxx
I am really sorry you didn't get the referral to Dr Griffiths, I was hoping he would be more help in untangling whether you have Behçet's or something else (or Behçet's AND something else).
If I were in your shoes I would go back to the GP - or even a different GP - and tell them you want a second opinion. The GP could then refer you direct to the Centre of Excellence, if that is what you think is best for you, for the 'second opinion'. You clearly think that you fit the Behçet's criteria.
You can also ask the rheumatologist directly to refer you to another rheumatologist for a second opinion. If he says 'they would say the same as me' you will have to point out that that is precisely what you want to test.
Have you looked into contacting a Behcets' Centre of Excellence direct yet? I think the above suggestion to write your health issues into an email is a good one. Keep it succinct - bullet points are your friend, they enable health practitioners to read and respond quickly. Then if you talk to them on the phone, you can follow up with the email so they have something on file. That is what I did prior to my own referral.
Keep us posted. I do hope you are coping OK today.
Thankyou, I'm bit worse for wear tbh it's my pip trib today & not wink slp. My mental health took a dive so called Gp who thought best send in crisis team. It was distressing & added to my stress levels. Obviously am relieved they don't think I need their specific help but did feel from what they said I was a waste of their time. I don't think it was meant to make me feel crap. I just told them I took my GPS advice.
Think she want help me n worried but I just can't seem to get the. IMPORTANT information out. No filter. Even today I never explained the OTHER 50% he picked up on it but I still got distracted n never explained! I'm like a rambling unfocused idiot who tells them everything except what matters! Even with lists as I had decided not important but I really think it was.
I am really sorry you are under so much stress. I am sure it will lessen once your PIP tribunal is over. It sounds like the mental health team think it's a temporary blip too.
One step at a time. My favourite mantra is: "I don't need to do it all today".
If you feel you didn't get your message across, try again another day when you feel calmer.
When you get back from the tribunal, try and spoil yourself a bit. Get plenty of rest and good nourishing food. Take your vitamins. Stay off caffeine if you can. Give your head a holiday with a funny movie or a good book. Have a pamper session. Do a bit of gentle yoga or go for a little walk. Talk to an old friend.
It might all sound a bit trivial, but these things taken together are a powerful recipe that will help your body recover from the stress you've been under and make your next steps easier.
Sounds like very good advice Thankyou. My tribunal got adjourned! Was devastated but OK now. If I won Joseph would be entitled to extra free childcare in September but don't know now. They getting access to medical records could be up to 3-5months I reckon before any help. But nursery want answers now it was horrible experience as well didn't sleep for even 1minute!
Was going to get new gp but with Tribunal requesting my records figured it might complicate matters. Husband is so fed up of the whole situation & wants me to drop asking for help other than medical but I can't as my struggles mean I need help.
Im watching Corny Arrow on Amazon that helps! Lol
& try to get taxi from pottery so I can see friend. If she not given up on me.
Also emailed Dr Griffiths secretary out of sheer despair. I can't believe my gp didn't put referral in. I looked at the St Thomas Trust Criteria for lupus & that looks quite likely also.
Rheumatologist actually blames my fatty liver for rise I CK. I know because my GP said, it could be your fatty liver also but I'm not going to say that. Grrrr.
My ME ASSOCIATION mag talks about consultants who don't have a clue about patients condition for numerous reasons simply label us a "medically unexplained symptoms" & class it as somatic dysfunction. Even though ME ITSELF has strong scientific evidence of disease. Because I'd been referred to the cfs clinic prior to OSA diagnosis he just wants push me off there. But why he refuses to take my positive blood tests seriously in line with my symptoms is beyond me.
I had to share my unexpected good news! Out of sheer desperation & your great idea to contact people direct I contacted Dr Griffiths secretary. I didn't think she would get it let alone reply personally!! she told me my GP now agrees to a referral to her & because of my new 2 CK elevations she's arranged a mri of my thighs with a view to biopsy. This is such a relief. My rheumatologist was not going to do that only repeat test monthly via GP. Thank you so much for your suggestion; you are a true friend and a godsend. I feel something heavy has been lifted from my shoulders & now know I'm in good hands. Xxxxxxx
Do you ever find blood in your urine without having a bladder or UT infection? And I don't mean menstrual blood. This happens to me periodically; there is pelvic and urethral pain, but normal ua tests. No one seems to have an answer.
Not that I've noticed. I don't dip stick myself. Yet! But Dr asked me if I had any problems weeing, if it hurt of needed go but couldnt. Made me wonder if they found anything. There was few white bits in it.
So, good news, I got in to see Dr Griffiths! They kindly called me after a cancellation I had an hour to get there. With a toddler in bath & me in Jamas! I'd only just. Listened to voicemail. It amazing what you can do with adrenaline pumping!
Straight away she told me my joints were laxed. She said these diseases often overlap. That my muscle inflammation was not likely to be due to Behcets. She sent me for. Chest XRAY & got me an appointment with the lung function department regarding my flares of breathlessness. She did host of Bloods. She was v kind & listened to my concerns. She was not at all dismissive. She is chasing up my mri appointment.
So thank you for all your help it is paying off. I feel I am now in good hands with a consultant who believes me & wants to help.
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