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Behçet's UK
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Sparkles and negative blood tests

my dermatologiinsist that I have behcets although I have not had any more mouth lesions in the last 6 months and he has me on colchicine spironolactone betamethazone for flare ups doxycycline, and tarazadone. my rheumatologist does not believe that I have behcets even though she and my dermatologist have talked directly and know each other personally. she keeps saying she thinks it's psoriatic arthritis. But my symptoms do not match psoriatic arthritis none of my blood tests ever come back positive for any of the right things to be positively sure I have any of those things and in spite of all the negative test results my dermatologist had me on azathioprine in November but my body couldn't metabolize it and it made me extremely sick I'm still weak and not myself from it. I don't know what to do at this point. Does anyone else ever have strange sparkly spots in the same areas that they have inflammation and lesions sometimes in places that don't have lesions? You have to be taking a picture of The afflicted area generally to be able to see it. I also have tiny oval black and white specs that come out of my skin after a shower. makes me worry about morgellons more than I worry about these other things 😵🤪 any feedback is appreciated

The attached picture has a sparkly and a black speck

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Skin pathergy response only BD confirmation that I know of. What are CRP & ESR bloodwork results? If elevated then inflammation present

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They detected inflammation in a biopsy of my forehead skin that was an active lesion at the moment and also my teardrops and they said that I had inflammation in both but that's all they found they didn't find any evidence of any viruses or fungus or bacteria just the inflammation for no obvious reason.also my doctors never really do a good job explaining any of my blood test results to me. which I know sounds terrible because I've called them and tried to get them to explain it to me but they purposely say things in a way that they know I'm not going to understand if I can't remember exactly what they said and go Google it once I get home.I guess because they're going to prescribe me something awful and they know that it's just using me as a guinea pig and they don't want me to say no so they just confuse me with the results. Because anyone in their right mind would ask why they're prescribing a completely unwarranted and ultimately useless drug and all of its side effects and warnings to me. Here in the United States human beings for cash cows they make money off of drug company perks if they prescribe enough of that drug. So they prescribe it to everybody so they can hit their quota.

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My skin lesions began on lower legs & buttocks but spread to trunk neck and head. Tried many Rx. After 2 years started Revlimid 5mg daily. Its a second generation thalidomide. Only Drs that are registered prescribes thru Celgene are allowed to order. Usually dermatologist. Off label experimental use. I had to go thru member appeals to get approved. Very expensive drug but haven't had any new skin lesions

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I have no idea what “sparkly spots” are or black specks. Do you think you have fibers coming out if your skin? Otherwise, it sounds like your doctors are treating symptoms. That’s all that can be done with Behçet’s before getting into systemic treatment and even that is treating a symptom or group of symptoms. I don’t think you are being prescribed meds so a doctor can hit a quota especially if the issues go away during treatment but if you believe that then change physicians. I’m sticking with my rheumatologist and after two prior dermatologists I’ve settled on the one I see now. She was willing to make changes in my protocol re:lesions and she is empathetic to the discomfort of genital lesions especially. Whether you are on private insurance or Obamacare you aren’t stuck with any particular doctor. Unfortunately no one on this site can diagnose BD for you although we can tell you if we have shared symptoms. Re: Morgellons have you been prescribed drugs for psychosis or has a dermatologist suggested Morgellon’s? That is actually a topic for a different page or website.

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I have not been prescribed anything for morgellons I even suggested it but my dermatologist says that those things are actually quite common for his Behcets patients. And most of them only see the sparkly spots when they are trying to document their lesions for him and I've suggested that maybe it's related to alopecia or some type of follicular issue but my dermatologist he's actually very good at what he does and he's actually way more dedicated and understanding than any other doctor I've ever seen you so I trust his judgement and the treatment credit policies following and honestly he's saved my life at least twice due to taking me on or off of medications that we're causing allergic reactions or even cognitive behavioral impairments and replacing the non-working treatment options with however many different treatment options he has to go through to find something that works. I don't believe I have morgellons but it's just part of the whole experience dealing with a bunch of seemingly unrelated symptoms and lots and lots of doctors that have incorrectly diagnosed what was wrong. And yes some do just like to prescribe you to whatever they can even if they're really not sure what the problem is they're just hoping that they can throw something at it that will work. And that's not a negative thing that at least means that they care enough about your discomfort and problems to attempt to find a way to ease your suffering. But with me being on Medicaid a lot of the doctors that are covered by my insurance spend more time making inferences rather than listening to the actual symptoms and events. I've read about people with alopecia which is what my opthamologist thinks I have and some people whenever they're going through a flare they will have baby hairs that die off before they can even fully develop and I'm kind of thinking maybe that's what I'm seeing is the beginnings of baby hairs and then on top of that I have overactive sebaceous glands all over currently and maybe that's what I'm seeing is the excess sebum or even keratin shining in the camera light. Either way my opthamologist sent me for allergy testing that's originally why I went to the dermatologist and the first dermatologist I got to see instead of doing the testing that was requested gave me 2.5 hydrocortisone cream to put on my face, yes on my face and told me to follow up in a month. I'm sorry if anyone out there has been through anything like this but that wasn't the first or the last doctor that did something like that. I've told many doctors I'm allergic to penicillin and yet my PCP still put me on cephalexin... And I almost died. So I'm happy for anyone out there that doesn't have to go through this and it can actually afford to go to doctors the base their inferences off of tests that actually make sense but unfortunately here in Texas you get free medical care due to medical expenses and there's a reason why the doctors that you go see are free. Every now and then you get lucky like I did with my dermatologist and find one that's actually not paid off of every visit and then they really truly listen and make sure you don't have to come back over and over trying new options but not testing the obvious stuff first. For instance why didn't my dermatologist do my allergy testing? Checking my skin for fungus or bacterial overgrowth or whatever. they never tested anything other than my blood which every other doctor did too and still found no answers like I told them they were going to experience as well. prescribed me something for an allergic reaction which didn't help at all and is doing more harm than good... And that's just one instance I'm 29 I've never been sick or had allergies in my whole life and now my life is falling apart because I'm having to battle all these side effects on top of my already horrible symptoms. And the only mental issues I've developed stem directly from the trauma and emotional destruction I've experienced going through this illness. I've seen multiple psychologists and every single one of them tells me that I'm perfectly sane and there is nothing that can be done about these issues I'm having because they're warranted feelings they stem from real life experiences and unanswerable questions. But thank you for your input I have an open mind and I always like to roll around the option that it's just something wrong in my mind because at least that I can fix.

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That’s a LOT to go go through! I see my rheum today,

He’ll put me on sick leave because if a combination of symptoms due to lesions there are times it’s better for me to let the lesions breathe in between applications of topical medications. The fibro-like pain is worsening as is the fatigue. The combination is wearing me down. Sometimes (more often) the pain requires strong medication that I cannot take and work or drive. Curiously, my skin is oily and im developing acne. My derm thinks it’s related to BD.

I’ve taken a several pics of my lesions in process. It’s certainly one of the symptoms that is not invisible. The pics are to defend myself regarding missing work. These obviously aren’t pictures to share except in an extreme situation or with the doctors. I never saw anything except for the lesions. That’s remarkable enough.

I missed that you are on Medicare. I actually don’t know how that works.

I’m sorry for what you’re going through.

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Thank you for your sympathy. I feel for your situation as well. I hope that you're skin issues don't get any worse and that your pain will lessen as time goes on. One cream that I can recommend is elidel it's even safe to use on your face. Medicaid is a double edged sword so all I can do is cross my fingers and hope for the best good luck in your journey.

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Hi, I would say from the photo google papopustular lesions and petchaie, also blood blisters can occur. If they are unsure have you been referred to a centre of excellence? Do keep a photo diary as well which clinched my diagnosis. Best wishes

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