Symptoms and misdiagnosis: Hi everyone, This is... - Behçet's UK

Behçet's UK
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Symptoms and misdiagnosis

Hi everyone,

This is going to be a bit of a long one but wondered if anyone else has had similar a similar experience and if my symptoms 'fit' because I feel like i am going in circles.

I have had digestive issues for years (including blood, mucus and undigested movements), which were first diagnosed as ibs, then a couple of years ago as mild crohns. I always have an issues with my blood work as it never seems to show inflammation, so crohns wasn't diagnosed until a colonoscopy was preformed, finding a few ulcers and some inflammation in my digestive track. I have also had ulcers in my mouth cheeks for years which were eventually put down to the fact I am often malnourished (iron and folic especially) due to crohns.

In the past year I seem to have had an onslaught of new symptoms. This includes ulcers on my tongue, down my throat, on my gums and lips. I also have inflammation in my mouth (silivary glands have been mentioned a few times), inflammation and ulcers on my privates, inflammation in my hand and feet joints, with pain in my knees, hair loss, painful and itchy eyes (i am waiting on an eye test for inflammation), worsening fatigue and constant rashes including the erythematosus macular rash on my face. I have low white blood cells, breathlessness (with occasional chest pain) and constant high blood pressure. I have also been hit with every bug and virus going in the past 6 months including lymphatic cellulitis and shingles!

I am now being told they do not believe I have crohns but in fact another autoimmune disease; lupus or bechets being the top two suspects. I am concerned I am going to struggle with a diagnosis as inflammation markers never seem to show in my blood despite being able to visibly see them all over my body (and doctors love a blood test diagnosis). I have however read this can occasionally happen with bechets.

So my first question is has anyone else experienced negative inflammation markers in their bloods?

Does this sound like it could potentially be bechets? (i know like other autoimmune diseases symptoms can vary from person to person, just curious on your opinions)

Has anyone got crohns and or lupus alongside bechets?

Has anyone been misdiagnosed with another autoimmune disease prior to a bechets diagnosis?

Thank you for your help :)

36 Replies
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What you have described sounds like Behcet's, I was a little like you in that I was told it was fibromyalgia, and had IBS first and then when I continued to ask to be seen by a rheumatologist I was then diagnosed with ehlers danlos (EDS), but could give me no answers for the ulcers and then eventually I discovered Behcet's and had to convince GP to refer me, diagnosed Behcet's 12 months after EDS diagnosis. Also have Costochondritis and like you my bloods never show inflammation even though totally visible, no answers from Rheumatologist as to why. The only time recently my inflammation markers showed a slight increase I had a bad throat infection...

First given colchicine which was great for helping with ulcers but I developed a toxic reaction to this drug within 10 weeks, changed to prednisolone but felt no benefit, now on Azathioprine 125mg daily which has certainly helped reduce the ulcers but done nothing for my joints and muscles, my body hurts everywhere at the moment... they tried anti inflammatory medications but my stomach retracts badly and I did not feel a difference, not able to take omeprazole type drugs as they make me feel bad.

Currently also being reviewed by Neurology who have just carried out a lumbar puncture and waiting for muscle and nerve testing. I was told by a previous rheumatologist I had brain fog but I have always discounted this, I have face, around nose into forehead and top of head pressure daily, in varying degrees.

Diagnosed with dry eye, my eyes were itchy, sore and occasionally large amounts of blood, use gels and drops now.

Also use soluble prednisolone mouthwash, spit out fluid after 3 minutes, for oral ulcers which helps better than other stuff, still continue to have sore end of tongue but my mouth and oral cavity is much improved with Azathioprine.

You really do need to get someone to prescribed you colchicine as a first thing to see if this helps your ulcers it acted quite quickly on me, loads and loads of people have a fantastic relationship with colchicine, but if you do have this please watch out for feeling generally ill and any rash, itching of the skin, get blood tested, full blood and liver function, my GGT levels went sky hi, even though they may tell you this is not necessary have at least 1 done around 6-8 weeks.

Hope you can get someone to start to try and help you get relief from your symptoms as soon as possible.

Take care, Gillian

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Hi Gillian,

Thank you for the response :)

I have a similar issue with meds and my stomach, so find iv is best but know this is more a temporary solution.

Oh gosh I hope everything gets sorted and it's not too serious!

I get sore and itchy eyes with loads of red patches and vein on the white bit- occasionally these go into the blue bit as well. I have received a letter of my hospital for an eye test so hoping this will give some answers regarding these issues. Just got to wait till august.

I were told to use cordysol which doesn't really have any effect. No over the counter mouthwash or meds do. It very rare I wake up with no ulcers somewhere in my mouth or throat. Drives me insane.

I will defiantly ask about colchicine however not sure if they will give me it as my liver functionality keeps dropping as well :/ xx

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August is too long to wait for an eye appt if you have symptoms. Have you seen an optician as they can do an examination and refer you to ophthalmology straight away if there are any issues. Also if you have a local eye hospital with an A&E go there for an examination ( or normal A&E ) if your symptoms get worse. It’s important to get inflammation in the eyes dealt with promptly as it can affect vision.

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Thanks Tynemouth. I've been suffering with painful and itchy eyes with floaters since December. I have recently moved and cannot get a place in my opticians which is why I have had to go through the consultant.

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I honestly would be requesting a urgent optician appointment, express how much pain you are in and the red patches in your eyes experiencing, they will see you if you explain, I did exactly this and was seen within a week, the optician advised I had dry eye and blepharitis posterior, the latter causing red and swollen itchy eye lids, the optician prescribed eye gel drops for day time and other gel drops for night. I have since seen an ophthalmologist in January who agree with the optician and his only comment was to request from the optician a more oily drop for night time, and my GP decided to prescribe Hypromellose drops, these have worked well for me, he said they would hydratemy eyes more during the day and the night gel would likely work better. I do find my eyes are affected more when in flares. If I fly I have to be very careful as I have experienced on 3 occasions huge amounts of blood in the whites of my eyes, the optician advised I use drops throughout flights, drink plenty of water, turn of any air conditioning onto my face, I also need to use more drops in warmer weather.

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Thanks gillian. I will see if i can find an opticians or see if i can get my appointment pushed forward at the hopsital.

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Hello. Over many years, nothing has ever shown up in my blood tests. I believe this is very common with Behçet's. I hope you get a diagnosis soon.

Good luck!

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Thank you for your reply Jaxxi. It is nice to know I am not alone. Ive always been made to feel there cant be anything wrong because your bloods are fine. Drives me insane.

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Jaxxi ~ GREAT reply,

Yes I agree with you!!

My bloodwork was off once.

That’s why it’s been so hard for me to get diagnosed.

I had to have and take pictures of both types of ulcers to get My rheumatologist to get on board with the Behcet’s diagnosis. Thank goodness my primary care, gynecologist and mother didn’t mind taking them 🥴🙄

They all agreed if this doctor has to “SEE IT 2 BELIEVE IT” then we’ll make it happen. I’m gong on 29 years of symptoms off and on just more often and symptoms worsening.

I myself kept a log of symptoms and pictures. I also never went to appointments by myself. 5 out of 6 of my doctors believed I had it.

That made up her mind and she started treating me for it.

I bought Joanne Zeis book

Behcet's Disease (MyModernHealth FAQs) amazon.com/dp/1938549406/re...

Joanne’s book is wonderful and if you go through and leave post it notes on what symptoms you have had and have documented that will help when you’re talking.

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Hi there,

I, too, never have raised inflammatory markers in my bloods, despite all the very obvious inflammation throughout my body. They aren’t part of the diagnostic criteria for Behçets.

Good luck,

Will 🙂

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Thanks for the replay will.

What are the criteria for a bechets diagnosis?

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I get low neutrophils, inflammation markers are always low. However everything is inflamed.

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Thanks Tom,

Its nice to know we are not alone in this. Have you had any offical diagnosis, or still in limbo?

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I was diagnosed in my mid twenties, I’m 38 now. It’s literally attacked most places my whole adult life. I get so many symptoms ignore them, until they get so severe I stop functioning

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Oh no tom I'm really sorry to hear that. Hope you manage to get it under some degree of control eventually :)

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Yes this sounds very much like Bechet's. And inflammatory markers are most often low or negative. My GP thinks I have Bechet's and she started me on Colchicine, It stopped all the mouth ulcers and I tolerate it well with only minor GI issues. I have an appointment next week with Rheumatology Bechet's specialist in NYC and I hope he agrees with my GP. Good luck with your diagnosis, I think not having a confirmation is worse than knowing.

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Good luck with the specialist hope it goes well and you don't have too long of a wait.

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I went through years of backwards and forwards diagnosis. I was diagnosed with lupus for a long time but the lupus clinic were not convinced. The Behcet’s clinic say it’s behcets Syndrome with an auto inflammatory overlap. My sister is pretty much identical and they say she has an unidentified auto immune and they say sometimes it’s ‘rhupus’ Something like RA and Lupus.

I constantly have negative or speckled positive bloods whilst in flare and still disagree when doctors say my fluid filled joints are down to hypermobility alone. I disagree.

I also have incredibly bad stomach and digestive issues related to both Behcet’s and hypermobility.

As far as I understand it is incredibly common to have overlap conditions.

What I have learned is there’s no magic pill for everything but getting symptoms under control is important. Also a certain level of acceptance is vital. The Behcet’s clinic help me with ulcers, neurological issues etc. They are probably the best place for you to try to get to. Unlike Gillian colchicine only helped me a little but the triple mouthwash they prescribed was life changing. Corsodyl is useless and vile. Diflam is an over the counter anaesthetic for your mouth and is very good for pain. I was told by the clinic to use this on genital ulcers too. Getting it on prescription can be cheaper.

My physio helps with joint issues with hypermobility but she thinks there’s more going on there. The bladder and bowel clinic with digestive issues.

My advice is find a good GP or rheumatologist and get them to refer you to one of the centres of excellence as they are best to diagnose.

Best wishes

Vicki

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Hi VickiOliver,

Thank you for your response :) Sorry to hear you're struggling with solid diagnosis's as well, its the not knowing that's the worse.

I will look into Diflam whilst I'm waiting for results and follow ups thank you :)

If my consultant can't give me a definite answer I am defiantly pushing to be referred to one of the clinics. Do we know how long the wait times are in this clinic for appointments?

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I’m guessing about 3 to 6 months but that is a guess.

I think I’m at the point of acceptance about what diagnoses I have and ‘knowing’ what is going on for me 😊

Hopefully you’ll get somewhere soon. From what I’ve heard if Behcet’s is suspected then then we talk much better to get seen by one of the centres as only they are experts in it. It is very difficult for a general rheumatologist to deal with. My local rheumatologist just see’s me for bloods and to implement the treatment plans that are advised by the clinic.

All the best and always pop back here to ask xx

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I have had to use Corsodyl Gel in the past for oral ulcers it has been better than nothing. Also used for decades prior to Behcet's tea tree oil on oral and genital ulcers, diluted on the genital, also oral gargled with diluted.

I was wondering if you still have your tonsils, I had a horrendous time with mine throughout my life, they only took them out in 2014, throat infections have got better, they thought my ulcers would go and I would start to feel better... that was before anyone knew about Behcet's.

Also a friend was referred to London centre of excellence in February her appointment is this month, she was told by them she could also get her Dr to refer her to Birmingham centre of excellence as it might be quicker, she lives in between the two centres, she decided to stay with her London appointment. Unfortunately I am in Scotland and do not have any centre of excellence here and rely on the specialist at the hospital who I have to say are knowledgeable about Behcet's but whether I am getting the help I feel I need is debatable, I would get nowhere if I did not read extensively about this condition and did not ask questions and question them about what they say, I have had to become a much stronger person with every specialist I see simply because I have suffered from my teens to my 50's to be given any help or diagnosis other than pain relief... many of us don't get referred to London, Birmingham or Liverpool and have to manage with who we see and hope to get the best treatment, but knowing what is available and about this condition has really helped me.

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Hi Gillian,

I will look into the gel as well thank you :)

I do still have my tonsils and constantly have sore throats. Ive always thought it were due to ulcers but now wondering if there's issues with my tonsils as well. I will defiantly mention this and get them checked.

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My ENT specialist at the time and oral and maxiliofacial specialist thought my oral ulcers would simply go with having a tonsillectomy, I'd had so many sore throats and my GPs just were not happy giving me continuously antibiotics unless they could physically see infection. The ENT specialist sent my tonsils away after removing them and his comment to me afterwards was the results back said my tonsils were absolutely putrid inside, it was an awful operation and recovery was slow but I felt all the pain and discomfort would be worth me getting without my ulcers... sadly I feel my health deteriorated lots afterwards and by 18 months later I was just a wreck everywhere and nobody knew what was going on, and this is now over 3 1/2 years ago and I'm still battling. I truly believe that having my tonsils out has created other bacterial issues or something else that's just not being picked up, my ulcers became much worse again along with a very uncomfortable body inside and out, its sore all the time, in my muscles and joints, as well as my head and if it's not because of the tonsillectomy then I have no idea what is going on 😏 sorry about the moan I'm feeling pretty sore at the moment.

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OH no Gillian sorry to hear that :(.

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I also had non stop tonsillitis as a child, as did my sister, and they took them out as I missed so much school. I now think nothing was wrong with my tonsils and that we had childhood Behcet’s

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VickiOliver~

I used Penaten Baby Cream Crème and Bag Balm for my genital ulcers (I use to use this for my child’s diaper rash was at its worse) it made tolerable for me. You apply Creme first and then put the Bag Balm over it. I also even used the Bag Balm by itself.

I know others things work for different people but I have not seen anyone post these two. Here’s information on both and what they are commonly used for. Hope this helps others..

Penaten Baby Cream Crème Large, 5.1 Ounce amazon.com/dp/B004H5GD6E/re...

Penaten Medicated Cream has a thick, rich formula that stays in place and immediately starts working to soothe + heal + protect. Containing 18% active zinc oxide ingredient, it can be used for the relief of common skin irritations like diaper rash, itching due to eczema, minor burns, and scalds.

Jean Coutu › shopping › product › medi...

Medicated Cream, 55 g – Penaten : Cream and lotion | Jean Coutu

Zinc's role in wound healing. Zinc plays a role in maintaining skin integrity and structure. Patients experiencing chronic wounds or ulcers often have deficient zinc metabolism and lower serum zinc levels. Zinc is often used in skin creams for treating diaper rash or other skin irritations.Dec 5, 2017

medicalnewstoday.com/articl...

Vermont's Original Bag Balm Skin Moisturizer 4 Ounce Tin amazon.com/dp/B01AASJCPA/re...

What are Bag Balm? Emollients are substances that moisten and soften your skin. Topical (for the skin) emollients are used to treat or prevent dry skin. Bag Balm are sometimes contained in products that also treat acne, chapped lips, diaper rash, cold sores, or other minor skin irritation.

drugs.com/mtm/bag-balm.html

Bag Balm is believed to be safe for use on both humans and animals. Although it was originally designed to soften and protect cow udders and is still used for that purpose today, it is also used to heal scrapes and abrasions on livestock to prevent infection.

thedermreview.com/bag-balm/

Those that use it only use it for dry skin, never on a wound. Bag Balm is mainly lanolin with some petrolatum and a trace of 8-hydroxyquinoline sulfate, which is a coal tar derivative. Because of the trace coal tar, Bag Balm does wonders for eczema and psoriasis. ... Some nursing homes love and use Bag Balm for dry skin.

woundsource.com/blog/contro...

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I’m a little confused why I’m being named here 😊

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Oops only reason is because I saw you had mentioned something used for ulcers in your post, not meaning it for just you! Sorry if that made you feel that way, definitely not my intentions.. 🥴

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Ah it ok i wasn’t offended provably should have said tagged rather than named, I get words muddled. I was just confused as I hadn’t asked for ulcer advice and wondered if you’d meant to tag someone else, like the original poster, and it tagged me. I mentioned ulcers in response to the original post. I use the triple mouthwash prescribed by the centre of excellence, and diflam for pain relief. I wouldn’t add anything over the counter into that to interfere as they work extremely well. Are you in the US as the products you’ve mentioned don’t sound familiar? Are you talking about ulcers that happen elsewhere?

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VickiOliver,

Sorry I didn’t clarify about the ulcers. I was talking about genital

I understand about the words muddled. Mine get mumble jumbled in my brain as well.

I am in the US and unfamiliar with what you use as well. Is this prescribed or over the counter?

Thank you.

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Everything I take is prescribed by the Behcet’s centre of excellence. The mouthwash is well documented on the Behcet’s UK society website.

I was told by the clinic to use the diflam anaesthetic for genital ulcers. Mine are not that frequent or bad. This product is available both over the counter and on prescription.

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Hi Cbear.

You and I could be twins. After almost 30 years of horrible symptoms, my doctors have learned that my white blood cell count does not need to be elevated for me to be in medical dire straits. Until now, I have been treated with Crohn's medications (biologics) that are also used in Behcet's. That has served me very well. Now that my neuropathy has become critical, I will soon be undergoing nerve, muscle and artery biopsies to determine if vasculitis is the cause. If so, I will need to radically switch my treatment to treat the vessels supplying my nervous system.

Inflammation seen on biopsies ensured my matter was actively treated despite my white blood cell counts.

Are you receiving treatment? If so, does it provide some relief?

All the best.

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HI pixie,

Sorry to hear you're having a rough time. No not on any treatment ATM. They want to figure out what the issues (s) are before treating. Which I wouldn't mind if the NHS actually moved faster than a snails pace 🙄.

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You may be getting increased Inflammatory markers but are not being tested at the right times.

As you are realising, medicine is not an exact science. Opinions differ and change.

I understand that ulcers on the lips are not indicative of Behcet’s or SLE so this may be a separate issue ie HSV 1. Some of the other symptoms would do for Behcet’s, Lupus and possibly Crohn’s. They are so similar and they needs pulling together by an appropriate specialist.

Get copies of all blood results and reports and start to build an evidence based picture. Take photos of all rashes, swellings etc. This will help you get a definitive diagnosis.

Many of the people on this site would have had various diagnoses over the years. Either overlap or misdiagnosis.

Good luck!

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I always have positive CRP and sed rate with my flares. But some do, some dont.

You def sound b12 deficient, what were your values and are you getting shots or using sublinguals?

Two tests that were helpful for me, was testing for Intrinsic factor antibody and parietal cell antibodies- to rule out pernicious anemia.

secondly, next endoscope, have them take biopsies and run for disaccharidase levels. I am incredibly sucrose intolerant, and before cutting all sugars out- i sounded like you above.

once I cut all sugars, everything else fell in line. Inflammation decreased, ulcers went away. infections subsided... etc etc.

colcrys was really helpful with managing my ulcers in the beginning, but since taking in a "treat the body" approach- more so with diet, rest, cutting stressors- that has honestly done the most- and regardless of what autoimmune disease you have- those three will help you regardless.

hope this helps- please try it!

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Hi everyone :)

Just thought I would give everyone an update.

Got some of my results back. Believe it or not for the first time all inflammation blood tests have come back elevated (at least double what they should be- doc is concerned they're high esp as they don't usually show). The x-rays have shown bones are ok however the inflammation is in the soft tissue of my joints. Vitamin levels low (esp iron again). One vasculitis test came back mildly positive the other negative- apparently both have to be positive.

Unfortunately they didn't take enough blood so didn't get to complete all tests they wanted to (including lupus) so having to go back to hospital so they can continue tests. Especially now they have not just physical symptoms but positive blood work/results.

Bechets and lupus are still the main two suspects so I have the eye test I mentioned and also waiting on an appointment for a skin prick test. Also talks of him teaming me with one of his gastros to have camera down the throat and also colonoscopy to get to the bottom (no pun intended) of the inflammation in digestive track as well, though this will depend on other results.

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