So I was left feeling confident last week that my specialist had a diagnosis of bechets.i had a massive crash this week,joints swollen,bruises,mouth ulcer,headaches,heart palpitations,tremor and extreme dizziness.ended up in hospital and they did full bloods which came back as all normal.which is odd as I read my notes whilst waiting and it had a box ticked saying" bloods abnormal but non urgent".im now worried as they sent me home with a letter saying joints not swollen and labs all good.not that I'm hoping I have bechets but rheumi seemed confident and my symptoms all fit.anyone else have normal bloods?
Anyone experienced a flare with normal crp/esr? - Behçet's UK
Unfortunately many of us have " normal bloods " even when flaring badly. My ESR and CRP are only ever moderately raised and even then the levels don't reflect how I am feeling.
More experienced Dr's take an overall view of symptoms etc and don't just rely on bloods. It's infuriating and one of the reasons that some of us have such great difficulty getting diagnosed and effective treatment!
That's such a relief to hear.ive been so sick this week but ended up thinking maybe my consultant was wrong and it's in my head.they also argued my joints were not swollen even though 3 previous Drs said the definitely were.is there anything that an mri would expect to pick up as I'm having one of those too?
I think a lot of us don't get swollen joints with Behcets as the type of arthritis associated with it is non erosive ( ie it doesn't eat away at the joints in the way that Rheumatoid arthritis does ).
As for the MRI it depends what they are scanning and what they are looking for. If it's for signs of inflamation then an MRA is better ( where they inject contrast ). Are they scanning a particular joint?
There are very few Dr's experienced in Behcets as it's such a rare disease and notoriously difficult to diagnose ( average time to diagnosis 10 yrs ). Sometimes you don't get all the symptoms at once, they can take years to appear and in a piecemeal fashion. Most of us have gone through the " oh no it's not, oh yes it is " stage with our Consultants. If you stay in England you can ask for a referral to one of the Behcets Centres of Excellence ( C of E's ) that are based in London, Birmingham and Liverpool. Leeds have a good Behcets clinic as well.
Hang on in there, it's important to not give up, keep asking questions and pushing for answers!
I rarely have raised levels but recently when I'm not feeling too bad, my levels are elevated which is causing some confusion. Just like me to be topsy turvey.
That's me. I am technically the healthiest person alive according to my blood work. Fortunately for me, my Rhuemy diagnosed me off of previous bloodwork and from me describing the symptoms that I had (because by the time I had my appt i was feeling better).
Nabumetone worked pretty well for joint pain for me. Colcrys makes a pretty big difference for me for ulcers too. I am also on an anti anxiety that I take as needed...mmm maybe once or twice a week?
I seriously recommend getting on an anti anxiety. It's a vicious little cycle, Behcet's. You think/stress/worry too much, then you get sick, then your stress harder, then you become weaker....
Get plenty of rest, stay calm and feel better soon.
Great advice I often feel anxious but stress of Uni exams and working full time too has driven me into a flare which I now seem to have psoriasis type problems in my head never knew it was part of Behcets
yep college will do that. I cant believe I made it through college with huge flares right around the end of each semester. I think it was probably better that i was diagnosed then, I wasnt aware of all the issues and just kept going. Now that i am out, I feel better than ever.
Oops ! I have had BD for many years and suddenly started getting Psoriasis problems that I had never had before last year.
I have since got a diagnosis of Psoriatic Arthritis on top of the BD which I understand is pretty common since once you have one if these nasty little auto immune things then others often seem to crop up later on ! Lol.
Sorry if this could be bad news here but best get checked out for that one as well okay ?
Good luck and take care ! Mwah !
that's me too...normal standard blood results from lab work even when in the middle of a flare...ESR and CRP are never elevated. The only abnormality they've ever found in my blood work is a positive P-ANCA ( Perinuclear Anti-Neutrophil Cytoplasmic Antibodies) which you have to ask to be run specifically because it isn't standard. It is the breakdown of the ANCA panel which shows both the C-ANCA and P-ANCA results individually as being either positive or negative. Positive is considered abnormal and then they measure the corresponding titer value associated to it. There is much disagreement and confusion in the medical world as to how relevant the P-ANACA titer value is (some docs say it doesn't matter and some say it indicates the severity of the condition). Either way, if positive, the test does confirm that the auto-immune functionality of your cells are not behaving normally. Most often, ANCA tests are performed using indirect immunofluorescence microscopy (IFA). Serum samples are mixed with neutrophils to allow autoantibodies that may be present to react with the cells. The sample is put on a slide and treated with a fluorescent stain. The slide is then examined under a microscope and the resulting pattern noted. The perinuclear pattern (pANCA) is associated most commonly associated with MPO antibodies. Although the results of this test alone don't translate into any definitive specific diagnosis, it does show an abnormality in your body's autoimmune functionality.
From what I've seen and heard to date, most Behcet's patients don't ever have any abnormal blood results from lab work ups which is why the condition is diagnosed based on clinical evaluation of recurring symptoms only.
You are not alone - the search for concrete answers in standard western medicine tests is like being Alice lost in Wonderland sometimes.
Hi, I have only ever had mildly raised inflammatory markers, even during bad flares, the card produced by the Behcet's Syndrome Society has information on this ( a caution that ESR / CRP values do not necessarily correlate to disease activity.) Everybody's Behcet's is different, some of my joints do swell, especially in my wrists and hands and changes were detected on ultrasound scanning, often however, I have severe pain but not much swelling. Odd bruising (in the form of purpuric rashes) mouth and genital ulcers, urethral ulcers, migraine, abdominal pain and skin lesions are other classical flare symptoms for me. If you are in the UK, I would seriously consider a referral to a COE as my management and flare activity has been much better ever since my diagnosis was confirmed by them and I was started on a more appropriate treatment regime. Again, everybody's experience is different, some teaching hospitals and local physicians have more experience in managing Behcet's than others. I hope that you feel better soon, whatever happens, you are definitely not alone. X
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