Is this Behcets, please help!

[Blearyeyed]

Hi,

I am desperate for advice . I have been having a growing list of symptoms and illnesses over the last 11 years . I began with massive hormone swings and endometriosis which meant a full hysterectomy four years ago.

I have been having mouth and dental issues with ulcers turning into infections in my whole face only healed by antibiotics and massive facial and neck pain which the doctor finally put down to trigeminal neuralgia and has caused me to have teeth extracted from the pain , but the ulcers and abscesses still happen and have spread to my tongue and throat, this begins a flare up of other conditions in my body that do not slow down until I have a long course of antibiotics and antifungals which I have to fight to get from my GP.

I was referred to a rheumatologist , 14 months ago after a flare up which included

Ulcers throughout mouth

Thrush in mouth, genitals and candida throughout body

Infected follicles , given fucidin, spots that do not heal on lower legs and arms

Throbbing pain in my head, neck and ankles, wrists and joints

Throbbing veins and hot pain in upper thighs and genitals, with small blueish veins coming up that were painful

Blurred vision, dry ,itchy eyes, pain behind eyes, bloodshot eyes intermittently, floating spots

Fatigue, night sweats, stiffness, tight chest, pain under armpits

I had already been diagnosed with IBS and stomach acid issues, bloating and constipation.

The rheumatologist referred me to opthalmology and ENT as possible Sjorgrens or Behcets but then discharged me from their list because the waiting list was so long for appointments and told me to be re referred if there were any results.

I finally saw opthalmology last week , and despite being in a mainly quiet phase they found mild uveitis in my eyes and have put me on lots of drops and believe Behcets is more likely, I am now more concerned about getting a final diagnosis because as an artist I cannot afford to have this quickly growing issue with my eyes,

I will see ENT next week, but obviously, as I am in a quiet phase I am concerned that yet again I will be pushed aside.

Oh, and I regularly suffer brain fog and tingling or numbness in my fingers and occasional loss of coordination.

Please , could you advice me if you think I am as the opthalmologist said " test case Behcets"?

Could you advice me of what I should ask the ENT in terms of more tests required?

Should I be referred back to rheumatology or nuerology?

What other help or tests should I ask my GP for, they are not supportive, never look at all the conditions as a whole to try and work out a diagnosis and no nothing about Behcets, Sjorgrens or bother to consider autoimmune issues as a possibility?

I just want a diagnosis as soon as possible now, so I can get on a medical regime that could slow down the effect on my body, especially my eyes, I am scared of the idea of going blind because of lack of prevention more than anything else. If anyone can advice me about whom to speak to , or what questions I should ask or medications I can ask about I would be so grateful.

I try to keep fit when I can, take exercise and eat well there is nothing more that I can do until I can get proper medical help.

When they have done tests they ruled out RA, lupus, Lyme's, mono and the other usual suspects and the only change in my bloods is a higher than normal white blood count.

Any advice will be appreciated and I wish everyone on the forum more luck than I with their illness and medical support

[Colleen6082]

I’m so sorry you’ve been going through all of this without having a leader directing your health care. I definitely think you need to get back to a rheumatologist and have your ophthalmologist results forwarded on. I don’t know what country you’re in (I’m in Canada) but I’ve heard that there are 3 centres in the UK that specialize in rheumatology. It might be worth considering getting a new family doctor but I don’t know how realistic that is as I know they’re hard to find. Maybe before you do that, try to get back to a rheumatologist. Your family doctor can refer you for nerve conduction tests and a MRI and then based upon those results then you can be referred to a neurologist. I’ve heard with Vasculitis that it doesn’t show up as antibodies in the blood. So I think definitely get back to a rheumatologist. I wonder if you can be referred to a different rheumatologist, hopefully one who’s familiar with Behcets. I hope you’re able to get proper care and a diagnosis.

[Blearyeyed in reply to Colleen6082]

Thank you for your advice.

I live in North Wales and unfortunately it is very hard to get a new doctor and appointments and tests quickly on the NHS, I will be returning to the doctor to be referred to the rheumatologist again, but they don't generally give MRI and special tests until they are convinced of what will be found because of the expense.

Do you have Behcets yourself? If so, would you say it sounds like I am a Behcets sufferer? Do you know what is a good course of preventative meds for someone who sufferers with eye, vein and nerve problems as well as skin and mouth ulcers and joint pain?

Thanks for your response it's great advice and good to know my post is being seen

[Colleen6082 in reply to Blearyeyed]

I’m in the pre official diagnosis stage. My family doctor told me two weeks ago that he thinks I have Behcets. So he referred me to a rheumatologist, opthamologist, heart ultrasound, nerve conduction, MRI, and I’ve just done a bunch of blood tests, urine and ECG.

From what I know, the treatment for Behcets depending on what areas are affected is immune suppressant medication and corticosteroids but my knowledge is limited and I’m not medically qualified to suggest anything. I think the goal of medication is to prevent flares in order to prevent or decrease damage to the body especially the eyes, central nervous system, heart and clots, but not everybody has those areas affected. I would definitely go back to the opthamologist periodically to continue to monitor your eyes as blindness can be caused as a result of Behcets.

Can you ask your doctor to refer you to one of those three rheumatology centres in the UK. That’s where I think you’re going to get your answers. I’ve heard they’re really knowledgeable in Behcets. It sounds like Behcets to me but I’m not a doctor so I can’t say but I think rheumatology is what you need.

[Blearyeyed in reply to Colleen6082]

I am going to try and make sure I get an appointment with a specific doctor at my practice who is usually more proactive , it can be a lottery otherwise and I will ask them to refer me to a Behcets centre as well as rheumatologist after my ENT tests next week.

My opthalmologist seems to be more knowledgeable about the disease and is likely to be more helpful in pushing things forward and suprisingly I am getting good help from my dentist.

Thanks again and I hope you get the outcome and help you need quickly too

[Colleen6082 in reply to Blearyeyed]

I’ve heard that there are prescription creams for skin and genital ulcers that can help relieve some pain and I’ve heard of a lidocaine mouthwash to help dull the pain of mouth ulcers. I’m thinking I need to see a ENT doctor because my sinuses get stuffed up a lot where I can’t breathe out of my nose, my ears are popping constantly, I have a lot of pressure in my ears, sinuses, forehead and my lower throat area but fortunately no problem breathing or swallowing.

[Ashveer in reply to Blearyeyed]

Hi Bleareyed, since you are close to Turkey, it is actually worth to fly to Turkey, as they are the B.D. specialist - the Cerrapassa Turkey University Hospital Rheumatology has B.D. clinics weekly from what I know - I am also looking into this for my son - Dr. Hasan Yazicizi, renowed specliast is chief Rheumatologist there, and president of B.D. Turkey Association....you are so close, I would do this personally right away,....there must be Turkish associations in UK also, who can direct you more in this regard...

[Blearyeyed in reply to Ashveer]

Thank you for your advice.

You are right it takes far too long to get a proper diagnosis for this and many autoimmune illnesses but your health, and especially your eyesight is not something you can lose time in repairing.

I have now checked out that we are quite lucky in the UK having four BD specialist centres and one is close by to me in Liverpool so I will ask my doctor to contact them or do so myself first before a trip to Turkey, but I wouldn't rule out anything to get this into check.

People don't realise, and especially doctors , that when you keep pushing them to find out what is wrong it isn't because we are all unrealistic about health or looking for a miracle cure, we know that many illnesses don't get better they just get out under control, it is getting the right diagnosis to get the control back that we are all searching for.

Thank you for both of your replies and I hope things go well with your son.

[Ashveer in reply to Blearyeyed]

good luck, and going to Turkey for us is worth it, we are objective about this, they can see my son and make judgement accurately...

[PamWW in reply to Blearyeyed]

My gynecologist was crucial in getting me a probable Behcets diagnosis, by observing internal ulcers. If you feel pain, get it documented. It took me 15 years to get a diagnosis. Type up all your symptoms for the Rheumatologist, and how long you’ve had them, so they can see the progression. Your GI and bowel problems are identical to what I have had. Getting off any preservatives have helped me the most. Since you have uveitis, you should get a diagnosis. Most lab work will not identify Behcets.

[Blearyeyed in reply to PamWW]

Thank you so much for your support.

I have a feeling that many of the early issues I have had to with digestion, bowel , and gynaecology could have masked the fact that I have an underlying condition and so the treatments and operations I had in the early days were for issues that had occurred because of this underlying illness but that its effects often hide the fact that the disease is there and at fault, cunning devils that immune diseases seem to be.

I went to ENT on Tuesday and a consultant finally said that my symptoms indicate an immune disease and they just need to establish which one, the first time I have heard anything more than an offhand comment of , it could be Behcets , or, it could be Sjorgrens, and then no other offers to diagnose it.

He is getting me a lip biopsy to rule out Sjorgrens for good and told me that my GP should not have the difficulties or delays in referring me to Liverpool for Behcets tests , which my GP implied.

So, I am going to keep on the case , helped by all of your support and advice and make sure this referral happens asap.

I cannot wait for the day when, no matter what I am diagnosed with, I can come on this site like you and say how well I am doing on my medication as part of that good news will be because of the help of people on this site like you.

Thanks everybody

[TheHud in reply to Blearyeyed]

Hi Blearyeyed

the UK has 3 specialist centres. Is it possible you can be referred to one of those centres for a conclusive diagnosis. They are also the places that are able to access some of the trail drugs and are linked to research. It may be worth finding out if you can re referred via your GP or your dentist. The centres are London, Birmingham and Liverpool so abit of a trip for you depending, but not too far. behcets.nhs.uk/our-centers/...

Good luck

[Blearyeyed in reply to TheHud]

Thanks for your comment

Now I have checked out the Behcets Society and where the specialist centres are there is one close to me in Liverpool.

I am going to ask my doctor to refer me there and if they will not do that without lots more tests in other local departments I will contact them myself to get diagnosis and advice to take back to my local care professionals.

After years of growing symptoms and lengthy waits between tests and outpatient appointments I know that unless you get proactive about your requests and treatment and go to your GP with a list of specific questions to ask and queries about what tests could help things never progress.

The main thing with these illnesses that affect various parts of the body is to remain calm while dealing with the slow process and your GPs or Consultants or they begin to see you as unreasonable ( although wanting to get an answer after years of pain is not unreasonable) but most importantly you must control your own stress levels because stress causes more alarm and changes in your body which in turn makes all of your conditions worse.

Thanks again and I will be checking out the website and contacting them after ENT next week.

[TheHud in reply to Blearyeyed]

I have been referred to Liverpool and have my first appointment on the 5th June. I think the speed of appointment depends on how good the letter is from your GP. Mine was very basic.

[Blearyeyed in reply to TheHud]

Well done, and good luck with your appointment.

Please post back on this thread and let us all know how you got on, I know I would love to know how things are progressing for all the people who have commented on this thread so far. My question seems to have had alot of interest and is bringing up alot of great information on the pre diagnosis issues and needs we are all suffering with

Thanks

[Ashveer]

Hi, I have read your long post, it is an issue with immunity for sure, B.D. symptoms includes GU, as one of the criteria, since you have blurred vision Uvitis, and skin canker sores, from my experience with my son, Skin Specialist and MRI/Neurologist is a must, the optic nerve, cranial nerve involvement will be above all to rule out any issues with eyes, and biopsy of skin/canker sores tissue removed will also be useful, in Canada, the wait time in free of cost medical system is financially convenient but at the expense of your life, as it is in our case, often people working, like my son, cannot make the time to go outside of Canada to US or Europe - the expense/time all too much, but all too late...it is worth it to go get tested some other countries that you can think of, to get the results, but not medication - get recommended, and tested, come back to your doctor, or go to the Emergency in your City, and show them the results, they will confirm the results, and you have the choice of follow of their medical advice or discuss with your family doctor...that is what I think should have been done in my son's case - you have to advocate for yourself, I do care for all of you...doing your own research and learning about symptoms from actual medical reports of doctors who know the inflammatory diseases well, is also a good start, I have written to many doctors who were so kind to reply to me to understand my symptoms, without medical advice...and trying a diet plant based is a good idea, you can tell what food works and not work is also good.....best of best to you, Regards Jas

[Jules6663]

My daughter was diagnosed at Birmingham Coe three weeks ago, they are excellent there are three centres Liverpool and London being the others, your dentist can refer you as well. It mainly affects my daughters bowel she’s been in pain for 2 years 7 months before we got this answer.

It’s a five hour appointment, five specialists who see you then confer then they diagnose we are going back next week because her liver is not great because of the steroids she’s been on for so long. The treatment they want to put her on is not good when you have a liver problem.

You also have help with counselling and work related problems at the clinic. You need an urgent referral I’d say, people travel from all over to the clinics I believe that accommodation is available. It’s Thursday afternoon or Friday morning at Birmingham.

Good luck xx

[Blearyeyed in reply to Jules6663]

Thank you so much.

I feel for your daughter , how old is she?

I feel for all of our primary carers who in a way are suffering our illness with us , not just because of having to do things practically for us but also with the worry and stress they must feel about the suffering of someone they love .

I know alot of people with what are often called " invisible illnesses" get upset because their family or friends often give them the impression that they are just annoyed or frustrated by them for not doing more or having the ability to do what they used to , especially in flare ups. As sufferers we sometimes forget that we are having the same emotion of annoyance and frustration that we can't do simple things especially when we can't get anyone to put a name or a finger on our troubles. We often take it as uncaring because we are so tired when actually, when you are in a quiet phase , you can see clearly that it is part of people's coping strategy to cope with their own fears and stress as carers about how ill we are.

For my own progress, I am going to have my ENT appointment, then ask one of the better GPs at my surgery to refer me to the closest centre in Liverpool. I live in Wales, our funding is managed by the Assembly, not Westminster , so they may say they can't refer me , if so, I plan to contact the centre myself, I am more than willing now there is light at the end of the tunnel, and my symptoms are affecting my sight to have a private consultation to get a diagnosis if I must , I need to get on that up and down road of finding a treatment plan that will finally help.

I understand your daughter's plight, with a combination of years of meds and hormone swings I had to have my gall bladder removed, there are some things that you can do to help you liver health while on steroids to help it cleanse out the extra unused chemicals .

I take turmeric each day for diversion, and an omega complex , I also take garlic, take them just before eating a meal so that they are actually digested and don't just slip through your system.

for general liver health daily, I drink ginger tea or add fresh ginger to a juice . A couple of sharp green apples , like Granny Smith's, celery , green pepper are a must.

If you can have some fresh papaya, fish, chili, olive oil and apple cider vinegar in your diet, they actually work in combo in a salad with lots of greens and lives and tomatoes.

Most important, when you are on alot of meds or checks having that fat, heavy dull pain in the liver area, you have to go low fat .

This includes reducing beans,peanuts, sweet corn and peas in your diet and onions can oddly also cause a bad reaction too.

Porridge is really good, apricots, almonds or Brazil's , berry fruits and probiotic yoghurt, pineapple . grapefruit each day ( but check if you are on something like omeprazole or other stomach reflex drugs as it counteracts these drugs )

Hope things go better for you , just remember you always have a place here to find support

[Jules6663 in reply to Blearyeyed]

My daughter is 22. It’s taken 2 years 7 months to get diagnosed the important thing is not to give up. We were told it was an eating disorder three times but we kept on and eventually saw a Dr Ed Sung at Nuneaton who got a vascilitus diagnosis in two weeks.

My daughter can eat very little because it is her bowel it affects the most.

I think the clinics are private anyway but are funded by donations and fund raising I think it said each appointment is £1400 because the doctors come in for them they are not based at the hospitals. Look it up they are on the internet.

[PamWW in reply to Blearyeyed]

You are right on! I have the same experience with diet.

[Blearyeyed in reply to PamWW]

Hi Pam,

Keeping an eye on my diet and trying some light exercise when I can has been one of the only things reducing my pain and the length it takes to get over symptoms of my flare ups for years.

I sometimes use natural Stevia or honey as a sugar substitute and as an avid baker have come up with many cake, pudding and bread recipes that are sugar, gluten and often dairy free.

I find you are still ok with probiotic yoghurt and it is helpful with digestive issues even when you can't cope with most other dairy products. I have also been advised to reduce salt and salinate based products as they can add to flare ups.

Tony said that there is an interesting article on these on the BSS site links, apparently you need to check in many pharmaceutical things and food products for these ingredients .

I use buckwheat products and flour, almond flour and other high protein flour and pulse alternatives.

I swear by ginger, turmeric and garlic in the diet and green apples, celery, green pepper and apple vinegar in my diet each day has really helped to rid me of that bloated liver pain that can happen , especially when you have to take alot of medicines like steroids of antibiotics.

[sam0511]

I would say definitely Behcets - can you get referred to Liverpool where there is a centre of excellence? I note your location so that would be the nearest. Good luck - keep posting.

[sam0511]

With regard to the ulcers - cut out anything anti-inflammatory - all reading my posts will be sick of me going on about it but it was definitely a factor for me - this includes creams and foods. Azathioprine is the wonder drug for me. Again good luck x

[Blearyeyed in reply to sam0511]

Thank you for your posts, I will definitely be in touch with Liverpool soon .

In some ways , the positive side of my eye results is that it may have finally narrowed down the options of what I have to Behcets rather than Sjorgrens or some unknown illness , which means I can be more proactive and I may be a step closer to getting the preventative course of help I need.

Thanks for the comment on the anti inflammatory stuff, over the years , the only way I have kept my sanity and often got my own issues under control is by a system of trial and error with foods , exercise, environmental management and the meds I could get, I have become quite good at feeling a thing coming and adapting my lifestyle to reduce the flare up or control the symptoms but the eye issue means the quicker I could get the driving combination of meds the better now, time is of the essence and,I cannot wait for my care system to get around to doing stuff anymore.

Thanks and good luck with your own health, it's just so good to know there are people out there who listen, will help and have good advice .

[sam0511 in reply to Blearyeyed]

This group has been a godsend to me - you can feel very isolated with it but I think Behcets is getting more recognised now. Please push for referral - especially if you have had eye involvement. Azathioprine has been a wonder drug for me. x

[Ashveer in reply to sam0511]

yes, azathioprine seems to be working for our son, so far....worried for his vision...

[sam0511 in reply to Ashveer]

My sight was effected - I understand your concern because Behcets seems to be worse for males - but my eyes are stable now - no inflammation at all. 150mg daily after initially being on a high dose of steroids which did the trick - been off those for 18 months now. Keep posting - I am interested to see how your son gets on x

[Ashveer in reply to sam0511]

thank you Sam, happy to know that you have stable sight now - I wonder what happens when patients relapse in future - particularly when CNS is involved - I try not to worry about this, but it is unavoidable as blindness is worse prognosis of this disease - I understand that test for HLA B51 is not a guarantee but can tell chances of relapse and what we can think of doing now - I do not want to wait for after the fact with azaithporine if this is not going to work in my son's case in longer period of time...we need guidance now to preplan as much as possible ...

[sam0511 in reply to Ashveer]

Those were my thoughts exactly - what if the Azathioprine doesn't work or I relapse but I have just had hospital check a few weeks back 18 months in on Azathioprine and all is "quiet" according to my ophthalmologist. He says I am considered a success - there is no reason why you cannot be the same. It is the same with any illness - always a chance that what works for one doesn't work for another BUT - there are alternatives now. I know because I asked as I had the same thoughts as you. Regarding the future - medicine is developing so fast - in the next ten years Behcets will be diagnosed more easily, numbers of sufferers will rise because of this and we won't be a silent minority anymore. Regarding pre-plan - this was the bit I struggled to come to terms with. I have had to accept that with Behcets you can't plan - but it is the same for any illness - no two people are the same. Find some medics you can trust and stick with them, it is hard but try not to think about the what if's.

[Ashveer in reply to sam0511]

thank you Sam0511, you are exactly the feelings we have, the if part, thanks for telling me that you deal with it too, and not to worry, coming from someone who actually has it the same disease means a lot, it is different when my loved ones tell me this, oh, don't worry about the future, they have no idea what is truly like to be me as mother of son, who knows what has happened to him (he had innate immune system all of his life as he got sick with kawasaki measles at age 10 and was sick couple years before while travelling to India with dirrhea bout, I know that he was never the same child again and now here we are together in this sickness from various walks of life...it is true, that Behcets will rise for sure, for example in Canada, we have now more diverse population as ever, particularly from the pre-dominant silk road route population - and I think the medical system needs to step up of doctors who recognize this disease, I know that my son's case has brought lots of awareness to all of the doctors he seen, and they are startled, my GP did not even know of this disease, and she had to look it up, as for innovation of eye clots in my son's case, there is new advancement of eye robot to remove retinal vein occlusion clots surgically, never possible before, it is at the Univeristy of K Lueven, Sweden Research - I have written to the Opthomologist to see if this is possible in B.D. RVO clots - I know they are selling this technology now and new invention can perhaps help my son; maybe stem cells will be real success too, not right now, I know a patient in vancouver tried stem cells after his attack in Vancouver, I wrote to him online, he wrote me back that it did not work, but acupuncture 4-5 treatments a week can help in nerve damage, also same for tongue/speech they try it, and that it promotes speech - I am going to try this for Ashveer - I saw some articles online from China for neurological speech dysartheria they use acutpuncture in tongue area to send back signals to brain - together with speech therapy, there is better success...so we try and help others to help each other...with you this morning....

[sam0511 in reply to Ashveer]

I wish you all the very best - please keep us all posted on how things go. x

[Jules6663 in reply to Ashveer]

My daughter was due to start this drug but has been in Predisonine for a year and a half and her liver has suffered we’re having to go back next week to Birmingham. Hope they can still put her in it because it seems to help so many people.

[Ashveer in reply to Jules6663]

Hi Jules6663, that is scary fact of Azaithporine but it is for eye involvement - my son we are told will be on it for 5 years or so due to brainstem involvement ...

worried yes, choice no....

[Blearyeyed in reply to Jules6663]

After reading the post I received from Tony and the information on the website about the CofE in the UK, you seem to be heading in the right direction with the most knowledgeable people in the field of Behcets .

I am sure that if there is any possibility to get your daughter on the right drug they will sort it out or give you the advice to help mend the affect of the steroids so that they can get her on the right drugs as soon as possible.

They are teams that work together for you and will see you as often as you need , most importantly they understand the disease and its effects on their patients, unlike what happens in the usual health system were you get pushed from one specialist to another over years and no one seems to work together to organise a diagnosis or treatment.

I am trying to remain optimistic and hope a referral will bring me some answers one way or another. Behcets or not, and in your case the optimism is in the level of expertise you are surrounded by in Birmingham with your diagnosis and the growing combinations of drugs and therapies that are coming for this disease.

Good luck, try to remain as calm and positive as you both can, I find it is the only way that the stress of the situation can be prevented from making your symptoms worse.

[TonyWT Partner]

I am so sorry to read about the ordeal you are going through, and that you have documented. I have posted a private message to you but, for the benefit of others experiencing difficulty with referral have summarised here.

Please get hold of your ophthalmologist, first thing on Monday morning, and ask for an immediate further appointment. If by chance you have the email address then you could email this all to the individual in advance of your appointment.

Take in print-outs of the following three documents. They are prepared by our Medical Advisory Panel and are accessible not only directly to any individual but via a link from NHS Choices to the Behçet’s Syndrome Society (nhs.uk/conditions/behcets-d...; i.e. they are officially recognised by the NHS because they are written by clinicians who are recognised experts in the field with detailed experience of Behçet’s.

The first is about Behcet's and the Eye. Ask the ophthalmologist to kindly read it. behcets.org.uk/wp-content/u...

Next ask (I might suggest demand) to be referred immediately to the Birmingham Centre of Excellence. The details are on this link, which explains exactly what to do.

behcets.org.uk/referral-cen...

[I subsequently noted you said Liverpool is closer - fine suggest them]

Then give the ophthalmologist the details off all the contacts on this link.

behcets.org.uk/liverpool-ce...

Emphasise, this does not cost their practice anything - nor the GPs/CCG if you went through that route (but I suggest you don't, given your unsatisfactory/fickle experience with them thus far). It is centrally financed by the NHS.

(Your dentist could equally refer you. The details of Behcet's and the mouth are here.

behcets.org.uk/wp-content/u...

You are welcome to print this all out and show it to the ophthalmologist. Where problems with the eyes are concerned, speed is of the essence. It might be handy to keep it ready, if at any stage you have to attend A&E in the meantime because of further problems with your eyes.

If you were requesting referral through you GP/local medical practice I would also recommend you document your specific request, and hand it to the individual concerned (asking them to document why, should they refuse to refer you to a CoE). From what you have said about your ophthalmologist, who appears knowledgeable, this won't be necessary.

Please compile a written history of what you have been through over the last 11 years (if you haven't already) as it will save time when briefing new clinicians (and particularly for use by the CoE - which you could send to them in advance when the referral gets accepted - which it will).

I trust this helps.

Email me if you need further assistance.

Tony

Chair Behçet’s Syndrome Society

[sam0511 in reply to TonyWT]

Excellent advise.

[PamWW]

God has done the impossible for me; and I have been free of flare ups for quite some time. Colchicine worked well for years. But I have also been lead to avoid any preservatives; I read all labels. Absolutely no diet sugars! Also found out I have a genetic enzyme mutation which prevents me from processing folic acid; I suggest everyone be tested for MTHFR; one out of four women have it and it can cause toxicity and stress the body. I am finding that milk products and flour products create problems for me. Right now, I have ulcers in my nose from sinus inflammation. Anyone else get that?

[Blearyeyed]

Yes, I get spots that are like ulcers or fiery blisters up my nose and around the sides, they are not cold sores because they break, scab and heal in a very different way, much like the ones I get on my forehead arms and bottom of my legs.

Sometimes they occur during a flare up of lots of symptoms, sometimes on their own or when I am having trouble with my eyes and joints.

You do begin to have so many different symptoms going on in so many places that you begin to forget to mention them, or get scared that if you tell your doctor all your symptoms that they won't make an effort to a diagnosis of what is causing you the most trouble .

[JulienF]

Have you had a genome test yet. Took me many years to be officially diagnosed and it was on confirmed with a genome test to see if I had a HLA-B51 marker. This would definitely help determine if it’s actually behcets

[Blearyeyed in reply to JulienF]

Not yet,

I have asked for my GP to refer me to a Behcets CoE in Liverpool, but that is slow for me because I live in Wales and they have to get approval from the local health board first, and my GP practice are slow at doing these things . I assume that is done as part of their tests.

I will need to chase my GP up again soon to get a referral quicker , but the uveitis or street of trying to sort out these things has flared up my joint pain, given me headache from eye pain and caused the throbbing and pins and needles to kick off in my legs again over the last few days so as usual the illness causes delays in your ability to fight to get the help to find a diagnosis.

Thank you so much for your advice, and good luck with your own health

[JulienF in reply to Blearyeyed]

Thank you. Wishing you the best. I had to fight to be given the genome test but without it they kept me in the dark.

[Blearyeyed]

Hi,

I just wanted to update all of the kind people on this site that gave me advice and support despite going through their own difficulties that I have been referred to the Liverpool CoE and should hear about an appointment shortly.

The speed that this change in progress in me getting a diagnosis is totally down to you, and specifically , Tony of the BSS , with all of the information about services in the UK and extra support he has given me about how to deal with getting a referral, but all of your help , advice and support has changed my prospects , and given me hope for a diagnosis and treatment for this illness that has blighted my life for 11 years.

For this and for any future support in the future I just wanted to say a big thank you . Sincerely, I have never been as grateful to anyone as I feel right now to you all.

I will let you know of the outcome when I have results and hope that in the future that I can be as supportive and helpful to others lost in the dark as you have all been.

[OpsDave70]

Hello,

There is a drug called Plaquenil that completely stopped my oral ulcers. My oral ulcers were horrible before I started taking the medication.

Good luck with your journey to perfect health. It’s not for the faint-hearted!

[Blearyeyed in reply to OpsDave70]

Dave I have looked at your other posts and you seem to be on the ball and have been so helpful with info on tests and doctors in the US, is it alright if I follow you and ask for the occasional advice.

I am in the UK with potentially different systems of care or medications but any suggestions I feel , especially for questions to ask will be of great help.

At the moment I seem to be having the worst flare up in my eyes, joints, legs , neck and head, a fire is burning that doesn't seem to want to stop, well, my husband always says I am not but this is ridiculous ( got to laugh or you couldn't keep it up! )

[OpsDave70 in reply to Blearyeyed]

Thank you for your nice note. Of course, please do follow me and ask away. I’m very aggressive in seeking treatment because I want to go back to my job as a zone control supervisor at the San Francisco Airport. I miss it!! So. .. if I sense that something is wrong or something better might be out there, I have the will and the means to jump on it instantly! Our health care system here in the States is so bizarre. I guess all systems have their share of problems. Anything we can do to help each other avoid an unnecessary, intrusive medical test or help each other navigate a flare, I am 100% on board! All my best to you. Looking forward to hearing from you more! Dave/Atlanta