I had my second appointment at the Behcets clinic on Tuesday.
There were bits of good news ( ulcers right sort, ulcers scars in certain places) and bad news ( high blood pressure , no diagnosis or drugs yet , trip back next Tuesday to see the Neurologist and the results of an unusual blood test).
The rheumatologist said they wanted to check me for Cryoglobulinemia.
I was sent off for a blood test and the Blood Nurse walked in with a silver cannister with locks filled with sand , like a prop for carrying Uranium in a Mission Impossible film .
They then proceeded to take my blood and carefully and precariously deposit the vials upright in the sand , locked the box , then carried it at arms length like an unexploded bomb!
The Bank Nurse stared at me from a distance like I was radioactive and I could hear the Blood Nurse calling , " Get out of the way please" as he went off down the corridor to the lab.
I am beginning to wonder wether my new Superpower is collecting unusual illness instead of a wicked sense of humour.
Or , perhaps , wearing my Darth Vader Christmas t-shirt ( slogan reads, I find your lack of cheer disturbing ) was a mistake and the Doctors now think I am some sort of Alien being sent from the Death Star to infect humanity with a bit of Christmas cheer!
Humour aside , I do need your help .
Has anyone else had this test as part of their Behcets diagnosis or as an alternative diagnosis to Behcets?
Does anyone have Cryoglobulinemia and can you tell me more about it?
Or do you know anybody who has this disease and how does it affect them?
My BP and pulse are racing , head and ears pounding , extremeties all throbbing and the palpitations and joint pain are sending me through the roof .
I have an Eye Clinic appointment tomorrow , but really I am just sick and tired of being sick and tired and rather concerned now that if I do not get some medical assistance by next Tuesday I am going to pop.
Hope you caring and experienced members on the forum can help.
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Blearyeyed
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The Code recommended this blood test for me too that was done at my local hospital but my test came back negative so I didn't hear anymore about the condition. Not much help I know but just to let you know I was tested for it. I think the blood had to be kept cold until it went to lab as it had to be tested at a certain temperature.
So glad I heard back from someone , I was hoping to hear from anyone , even if they hadn't had one, for it least that would prove that it wasn't just part of the Behcets diagnosis but something different.
I read up on the test a little further . It seems that they need to stop it changing structure and needs to be kept at body temperature.
Then , in the lab , they cool it to let the proteins and immunoglobulins sink to the bottom , then heat back to body temperature.
If the sludge ( precipitate) does not remix as it is warmer it can be Cryoglobulinemia and then the sludge is tested to see if it involves a mix of single immunoglobulin.
So , glad you were negative , it doesn't sound very nice , an angry add on disease , it can stand alone or be overlapped with Behcets , Lupus , Sjorgrens , Behcets , EDS and some of the AI related cancers .
Did you end up being confirmed with Behcets after that test ?
Thank you for helping me , you are the first , and would like to find out how common it is to have done before I go back on Tuesday for the results .
No worries..they think my skin blistering is something called sweets syndrome running Ali.gside the behcets... Frankly I Don t care what they call it as long as they can get it under control...I have already lost my sight through this dreaded disease!
Mine start as very amal spots and then develop into what looks like small whiteheads that just get bigger and bigger. My problem is they also affect the skin on the front of my eyeball hence the reason I have lost my sight.
Hey, I’ve just finished Lool-ing 😂, now gotta go & google the condition. Will get back to you x
I had a blood test for cryo’s when I attended a specialist Vasculitis clinic as part of my diagnostic odyssey. It’s a pretty standard test when they are ruling out the different Vasculitis variants/ rarer connective tissue diseases etc.
I suspect most of us have had complements, ANA, ANCA etc tested as well as part of the assessment. I would be glad that they are being so thorough and ruling everything out.
Yes I am glad the are being thorough but praying that they can give me some sort of better medical relief in the meantime for the pain and palpitations if I can't get the full diagnosis by Tuesdays appointment.
Don't mind waiting for a name but struggling now to deal with the pain.
Hang on in there. It took me 4 years to get a diagnosis ( have a Behcets/ Ankylosing Spondylitis crossover ) and I felt I was being tortured as the joint pain was so horrible. Thankfully Infliximab has worked fairly well for me, still have a few issues but joint pain is bearable now.
Are you being seen at a Behcets Centre of Excellence?
I have a feeling a overlap is going to be in the mix , alot of back and Neuro stuff going on , and a possibility of Pots / EDs ( already judged hypermobile , apparently my Beighton test photos put the Rheumy off his lunch!)
I found that it was more difficult to get a diagnosis when you don’t tick all the boxes. I do think that Behcets can be a very individual disease with large ethnic variations in symptoms.
With me it was finding a Consultant who believed in me, my symptoms and was prepared to treat them.
Will be thinking of you and hoping you get both answers and a treatment plan next week.
Well eleven years of flares with noone believing what was going on or joining the dots until coming on this site in April after a bout of uvietis and counting , I hope I have paid my dues by now.
Let's hope I get a diagnosis or at least some medical relief from Santa this Christmas.
I was reading your posts. Also severe joint pain. They put me on colchicine, imuran and it was not helping..now thought to try to add Humera and it calmed things down..Heres the odd part..it completely stopped my blistering of hands, mouth and other..but my joint pain comes and goes from a 1 to an 11 in pain..never know..but ive only been on Humera for 1 1/2 months. Im hoping it calms down. Any suggestions will help. Where I live these Dr.s know very little about BD also have RA & osteoarthritis due to so much prednisone over the years.
Thanks in advance for any info, suggestions , ect..
Back to Aintree at the beginning of April and I have an Echocardiogram and 72 hour BP test in a a week. Still no useful drugs , so still the same really. Fingers crossed for April.
How did things turn out for you , have you got an appropriate Rheumatologist now?
Please do let me know how it all goes if you’re able!
We actually had an appointment there again today, same place but Thankfully different doctor. I can’t remember if i told you what happened, but last week we got a call from the London Behçet’s centre from a lovely doctor. she explained how a lot of doctors just don’t really understand Behçet’s and how you don’t have to have a raised CRP. Her words were “as far as we’re aware, you have Behçet’s, we’re the experts, you were diagnosed by the expert and we’re treating you for Behçet’s.“
we explained how the GP wants even more “written evidence” from Prof about my Behçet’s diagnosis, due to the way that doctor behaved. The lady on the phone said that in October an official letter was sent out stating “Behçet’s syndrome” under diagnosis. she doesn’t see a reason for the GP to have any further evidence considering it is a 100% diagnosis. The lady from the coe did suggest getting the doctor to email her and they can write back via email to (again) confirm the diagnosis.
Also turns out, the mouth ulcer biopsy we had done October 2018 shows “non specific inflammation” often seen within us.
thankfully my appointment has been moved forward to June , everyone seems to think azathioprine is beneficial although the GP is weary because of blood counts/monitoring etc.
What a Blessing having the CoE contact us saying what they said prior. The appointment today was okay, I just felt that they’re still trying to disprove it... we went onto say how I’ve been diagnosed by an expert etc and she wasn’t rude, but just played it down.
She found a temp recording of the highest yet in her system which shocked her. She said she’s not denying the fever or anything but it’s so “hard to diagnose”, we went onto say what the CoE had in response to that. So she had all the notes from the coe (that we initially gave them consent for)
and we hit a bit of big news... turns out I am positive for one of the “Behçet’s genes”... also my TMPT came back abnormal so starting azathioprine would be as she said “toxic to my bone marrow”.
This confusion needs to be cleared up or we just need to realise whether or not we should bother going there again. What more proof do you need!! They’ve put through an urgent referral for a dermatologist and biopsy as I’m covered in lesions and rashes. She said both my knees were swollen but it could be because “a lot of teenagers have podgy knees” bearing in mind I’m significantly underweight I don’t think fat would accumulate there. She’s going to try to get a scan of the knees. She also says we can further increase the colchicine again and my bloods have to be monitored closer. I don’t know what more you should need in a diagnosis that they already have (they shouldn’t be rediagnosing me either!) . The Behçet’s centre did say a lot of doctors just don’t understand. It’s just so invalidating and offensive.
Then, the previous doctor (who we had that awful appointment with) was there.. he just glared at us, looking so angry. Probably embarrassed as to the CoE’s reply to “his new” (and disagreeable by everyone) diagnosis. He’s aware that the COE aren’t in anyway questioning their own diagnosis. He must feel a little embarrassed?
On another note, we got the result of the second GCSE and..... it was a PASSS! so happy
Brilliant news about the GCSE , miraculous with all you are going through , I couldn't go through what you are going through and pass an exam. I am cheering !!!
And gosh , you have morbidly obese knees have you?
Have they been stuffing themselves with Mars Bars in the night while you are asleep?
Sorry , I know it's not funny , but some things they say to cover their backsides or try and find an excuse for their colleagues previous mistakes are so ridiculous you have to laugh.
If you didn't there would be alot of Consultants with black eyes.
But it's such good news that the CoE have your back all the way in this.
You have Behcets . The experts have diagnosed you have Behcets. No matter what those idiots do at the other hospital they cannot take that diagnosis away from you.
And if they insist on doing tests to confirm what you already know all they are doing is wasting their own money. It won't change anything.
It is a good thing that you have a positive HLA , more evidence that can't be disputed.
But the wait for the TMPT result was probably a good thing , so at least you hadn't started Azathioprine before it so you won't have had any harm done there.
My opinion is when you return to the CoE, as long as you are happy with the travel, you and you parents ask politely if from now on , to save you any further emotional stress and unnecessary testing , could you have your treatment monitored and done by them and not at the hospital that is treating you so poorly ( and making your GP doubt the CoE too , drop that in they already know the GOs opinion and won't like being questioned by a lowly GP!!) .
It's worth doing to make sure you get the right sort of support , even if they are not technically a children's unit , because psychologically they are more capable of understanding the care you need .
If your GP , after getting their advice , keeps questioning it ( it won't be the diagnosis they dispute really but the amount of work they will have to do and money to budget for the tests that they wont like) then find a new GP that will give you the help you need at a new surgery. GPs are like Banks , we all give them our loyalty for years but they don't have any loyalty for us , so why stay where you are if the treatment is bad.
You get it into your head that they know you as you have been on their books for years , but often they have forgotten your medical history as soon as you walk out if the door , so if they make you feel more ill when you visit , visit someone else.
But on the whole very good news.
I'm really glad , now all we need is for me to finally get my rubber stamp and we can both celebrate.
My brothers gone and injured himself so have been in MIU with him and now he’s on crutches and I’m running around after him (my mum has a back issue).
Super glad to know about the TMPT before starting! As you said
Exactly! We’re clearly on the same wavelength about this. I’m at that point now where I’m seriously contemplating giving up with them. I emailed regarding a flare I’ve had and they said the GP should swab a mouth ulcer for HSV? I’m sorry... what? The Behçet’s centre have diagnosed me with Behçet’s, not herpes!
That’s just ridiculous. She says she will try call tonight explaining the genetic results but I’m at that point where I’m a bit bored of them. The Behçet’s centre are due to see me soon and Thankfully all consent has been retracted for them to contact the CoE.
The Behçet’s lady on the phone spoke brilliantly. We have nothing to “prove to them” and I’m just getting unnecessarily worked up.
Enough about me, how’re you?
How’re you feeling about your planned appointment in April? How did the appointment with the Neurologist go at the CoE?
Will let you know by PM tomorrow , nothing bad , just tired after next round of travel and tests.
You can message the CoE before your appointment explain the latest stupid request and ask them by mail if you can have all your care to do with Behcets / Rheumatology done via them despite your age and that you don't mind the travel to do it but that you would prefer to be given consistent care from people whom understand Behcets properly and will listen to you as a patient , and treat you as a young adult with knowledge not a child because the other Departments doubts and treatment are adding to the stress of your medical situation and not helping you progress physically or mentally.
They should contact very quickly to confirm this is possible , if they aren't sure you can discuss it directly with your CoE consultant at your next appointment too but you really don't want to be under a Rheumy or GP Surgery who listen to each other more than the experts and your GP should work on your behalf , not on the behalf of backing up the Hospital.
Hope your brother improves soon and take care , Bee xx
How are things? So sorry for the slow reply things have been so busy..
I got the clinic letter from the paediatric nephrologist today.. not very impressed. At this point I want to move to adults where I’ll be respected more.. He’s got the letter from that awful appointment (that I’ve mentioned many times) saying I have “chronic fatigue syndrome”. And the nephrologist wrote that in his clinic letter?? We all agreed I don’t have cfs and it was confirmed I don’t by a cfs expert..I don’t have CFS and that’s that. It’s just irrelevant now.
He did write about the Behçet’s diagnosis which is good and mentioned azathioprine but he seemed confused as he had reviewed that awful clinic letter (I understand how that’s confusing) one dr saying I have cfs when all the others say I have Behçet’s. But he has my Behçet’s diagnosis letter
We also had a catch up with the GP who was brill, she’s fully on board with the Behçet’s disgnoses (we told her about thr call with thr Behçet’s centre) she said that they are all treating me for Behçet’s
It’s just when I see these tiny mistakes like saying I have cfs really get to me (silly I know) .. people think I’m overreacting. I’m so Blessed to be diagnosed with Behçet’s this early
I’m planning to ask prof if she can put in her clinic letter that I do not have cfs.
Enough about me...
How are you? How’s your diagnostic journey going along?
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Well, you don’t look ill.
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