This is a totally new subject to my last post so I am keeping them separate.
I commented that mentally I have improved but physically I'm still having a lot of problems. It's odd how much difference it makes to ones outlook even feeling 'half' better (didn't know how to word it).
I had a biopsy done via the dermatology department of the hospital this past week. On the request the registrar wrote, ?Behcet's, ?PG (Pyoderma Gangenosum), ?neoplastic, ?vascular/neuropathic, ?traumatic
The pathologist has gone on to answer the queries above, in part ...
The features are of ulceration, dermal necrosis and acute inflammation. The morphology is not specific but due to the abrupt edge of the ulcer an ischaemic/neuropathic cause or trauma is favoured. Pyoderma Gangenosum and Behcet's typically show more extensive dermal neutrophillic inflammation than seen in this biopsy.
I have been getting these 'punched out' lesions for years. The first one was on my left calf with a coffee coloured ring around it. Over the years I have had similar lesions (thank goodness smaller) on my nose, chin, cheeks and arms. Now I have them around the nail beds on my thumbs and big toes (later on I will post a photo of my thumb to show how misshapen it has become through losing the nail and a significant amount of flesh).
They all seem quite similar, starting off with either a small sore, blister or split in the skin, but rapidly break down to what is a larger lesion below the surface. Then, for example say the larger lesion is 1 cm (1/2 inch) round, then it goes from there all the way through the thicknesses of the skin. This 'dead' tissue then slowly starts to break down, often it is in sacs or balls of debris with fairly obviously a dead vein or vessel inside the sac. Another thing that happens is it will build up quickly and then a pussy abscess will be expelled (quite often in the middle of the night, so it is not something I am doing). Sorry to be so gross, but the abscess will have a lot of granuloma, dead veins and again what looks like an attached nerve. I've thought it was the body's way of getting rid of things. Apart from that I have a lot of granuloma imbedded into the skin, particularly around the walls of the ulcer.
I'd like to hear from people with these types of wounds with abrupt deep edges, especially related to BD, but I'm wondering if I have two diseases together.
Now for the big one - has anyone else been accused of causing these wounds themselves (trauma). This is what is being hinted at all the time, because what the doctor usually sees is the ulcer already there, although come to think of it, a couple of times I have tried to show a them the start of these ulcers, but they are fairly small and I look like I am overreacting.
I've been looking at other people's posts and part of my problem is I have a very helpful neurologist, but the immunologist and dermatologist I think have had enough. I takes me three to four hours to get the hospital and I don't think i would have been in there for more that ten minutes, which included chatting to the nurses and getting a dressing done! I was out so quick I realised I hadn't shown them a large new one starting, but I honestly wasn't given the time. It is the difference between public and private health and I might see if I can do something about moving on.
Sorry if I have waffled on there, but basically has anyone else been accused of doing these deep lesions to themselves when you know very well you haven't. Also can anyone point out some information on punched out lesions and necrosis of veins and tissues.
Thanks Lesley
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lesleyg
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Oh my gosh...I have had a very similar experience. I have been accused multiple times of "picking" in order to create the lesions. They always ask, did you scratch it? I and I want to say well f*ck yes I scratched it! It itches!!!
The kicker is that the dermatologist fellow (or resident as we say here in the US) is a Stepford wife( remember that movie???) perfect skinned young woman who couldn't look bad if she tried! And here I am 55, overweight from steroids and breaking out in the most painful bumps on my face and nose and all I want is some relief. It's so frustrating. And it seems to be worse for women, these accusations.
Hi I get the odd ulcer down below and lesions but luckily have never been accused of self harm its sad the docs think this I would confront them take pictures daily when they occur and this may prove how they develops on a daily basis good luck
Yes, I was accused of self-harm due to the thick black scabs that formed over the excruciatingly itchy rashes that I rubbed (not scratched), sometimes the length of my shin or arm. When eventually biopsied they showed vasculitis and other BD characteristics. I was then a (senior professional) sole parent- the only financial provider my children. And yes, female of course. It took me years to get BD and a separate significant neurological disease diagnosed. Delays in diagnosis and treatment cost me my career. One (male) doctor wrote that I was a "thin anxious single mother.... With a plethora of unexplained symptoms " I was thin and anxious because I was a very ill single mother, and I was paying him to explain the plethora of symptoms. So nothing much changes then?
Hello everyone, thank you for your replies. Yes Reikichan I did see the Stepford Wives and I think you and I might look like twins! Lisl, BD cost me my career, business and I had to sell my house because I couldn't keep up the payments on the pension. My lesions also get very itchy. One dermatologist said to me that they were itchy because they were healing. This isn't true in my case as the itching is very intense, and precedes an ulcer, and like you I rub it, but certainly don't tear at it. Bob, I have been taking photos and one of the doctors who keeps telling me I am self harming (now that we've said the words) keeps asking me for copies of photos (which has me a bit stumped. In case you think I am being overly sensitive and imagining things, his words to me a couple of weeks ago were, "I think we have established that you are doing this to yourself at night".
In one way I'm glad that it isn't just me, but feel very sad that others are going through the same thing!
Hi Lesley I'm shaking my head in disgust at the veiled insinuation you e had to put up with. My suggestion to you & anyone else having similar issues is to take photos & it sounds paranoid I know but if you can take photos with a dated newspaper behind them all the better. This way it can be clearly shown the progression of the lesion or whatever it is ulcer etc. Incredulous your going through this crap! What next? Hang in there 😜 & remember just because something can't be seen doesn't mean it's not there hmm can be applied to all sorts of situations. hugs 🤗
I am really glad u posted about this. I am newly diagnosed and the itching has been over the top. The example of the length of ones arm really rings a bell. Same with legs. Even the palms of my hands and bottom of my feet. I have had my nose itch so badly I want to tear it off! I was told by one doc I had ring worm aka tinea all.over my body. Ha. Really dude??? I've been a nurse for 25 years and I know what tinea looks like. This ain't it! I have been questioning my sanity. Stepfor doc actually said it was anxiety. Oy
Interesting about the itching. I don't get that everytime, but have had it, especially on my shins and arms.
I worked as a secretary for a couple of psychiatrists (BD was just starting) the older doctor told me that my problems were highly unlikely to be of a psychological nature and I was also unlikely to suffer from anxiety etc. Yet here I am being labeled as causing these symptoms. I think I am annoyed because I got the message that I was wasting their time!
It's a horrid insinuation, but I suppose the medics have to query it as presumably there are people who do this sort of thing to themselves. The psychiatrist you worked for knew you personally, but someone who is only seeing you for a few minutes doesn't have that luxury.
I think MissTeddy's suggestion of a series of timed photographs is a good one. If you use a camera rather than a phone, it will have a date stamp feature on it somewhere.
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