Hi I recently have been getting sores perianal. I know they are there because they feel sore! I've had lots in distant past and a few recently. I finally managed to see what they looked like. They were small patches of pink skin with a red centre, centre looked like 2mm cut but I hadn't scratched anything. It was palpable. I'm trying to get a diagnosis. Lupus ruled out no ANA. Then looked like polymyositis as ck extremely high for 2 months. I can't walk far at all now, becoming more disabled. I've had continuing blood loss from bowel now fixed a high calprotectin few days later confirm no bug. Black tarry stool. Red Blood on wiping. Severe eye pain. Crohns ruled out by mri. I av adult onset pustules and last year had over 14 episodes of oral ulcers. Despite fitting the criteria and losing continuous iron in past, no one wants to consider behcets. My memory is so bad I considered I had early dementia. Polymyositis is now unlikely as 3rd test ck normal. Please can I ask if my sore described above sounds like Behcets? I feel I'm losing the plot. Thank you
Genital Ulcer appearance: Hi I recently have... - Behçet's UK
did any one biopsy a spot down below? That's important. they did one of mine and it came back just inflammation. no bacterial. no viral activity.
What your describing doesn't sound like an ulcer to me, but i have read a few people's accounts and honestly, they vary. Mine look like exactly what's in my mouth. Does yours? Mine are white with raw redness around it.
Is this link look like it? Says it can occur with oral ulcers, eye issues and joint etc
Thanks, my husband said it looked more like an eczema with a cut but today consultant gastro said today it just looked like acne, the soreness gone but quite tender to touch. My husband said today it just looked like 3 small red scabs as if scratched but hadn't. I know cos other place I get them I can't reach!
I looked at the link, it could be perhaps a very mild small patch of that, centre was blood red. It's like I felt it appearing. I could just feel sore on my bum! I had a big pustule on my back once, I felt a tingling sensation that's how I knew it was there. I don't get that with oily facial acne I also occasionally suffer from. Its different.
Thankyou, I don't think it's ulcer but I thought sore spots also counted, not sure.
I appreciate your help. Thank you
silly question but are you on any nsaids at all? what medicines are you on?
I try not to take them now had stomach bleed but last 3 days I did take aspirin for pain. I take Sertraline Amitriptyline pregabalin Omeprozole Paracetamol at times nefopam Coedine
i've been reading about conditions that can mimic your high ck and pink raw spots. there was a case study about medication induced rhabdomyolysis specifically with nsaids. if you think the spots and symptoms match up with the erythema multi form, read up on the first link and see the other body issues it can come with and ask your dr about it. the eye issues, the mucous membrane involvement- gouty like joint pain- it sounded like you described (i also went back a few posts of yours)
ncbi.nlm.nih.gov/m/pubmed/8... the last paragraph specifically was interesting bc you said you had tested high and then negative with ck but the muscle weakness was still there. according to that article the recovery time is long so something to consider.
i also read another very specific case study with a woman with medication induced rhabdo- and omeprazole was one. i mean everyone is different. everyone reacts diff to medications. there's a few on here that can not take salicylates. flares them right up. something to think about. hopefully the answer is right under your nose and you couldn't see it due to allllll of the bullshit that's been happening. happened to me. sugar triggered every flare- and i had no idea. it's so easy to get caught up in the whirlwind of this terrible mayhem. everyday there's just something else not right.
see if you can trace back any noticeable body changes with medications being added.
also two more awesomely personal questions: 1- is your urine dark like tea and 2 has your stool been tested for c diff? two things to bring up for sure with doctor. get tested for c diff.
tl;dr - sounds like you have EM and the symptoms that can complicate it. the EM can coincide and be a symptom of the rhabdo. assess medications and poop.
i do hope you feel better soon babe. we're here with you. keep us posted.
paragabalin can be associated with EM. aspirin. too. assess your meds. google them and all the side effects.
also just to read up on- steven johnsons syndrome. can also be medication induced with EM.
sorry to throw all the EM- at you but just tossing out any possibilities and tests maybe to get done.
Ulcers or not, WATCH THE BLOOD LOSS!
I DEVLOPED ANEMIA OF CHRONIC DISEASE, (AKA ANEMIA OF INFLAMMATION).
I almost died! My hemoglobin was sooo low - I could have died, I needed 2 pints of blood transfused ASAP!
I did not know Anemia could be fatal! I also learned not to trust doctors! Now, I know what the tests mean and when to question doctors!
You do need the "sores," biopsied. They have a typical, text book appearance. But, there are Behcets lesions that do not look like text book examples.
Set it up with your ob/gyn to get in for biopsy next time you have one. Things like Herpes virus must be ruled out, before Behcets can be diagnosed.
My lesions presented with gray-green, soft scabs, the size of American nickels. (The color of a garden slug!) I about died! Wait, I had the magnifying mirror!
The regular side wasn't much better, I thought I had "flesh eating bacteria."
The soft scabs dropped off - leaving an open crater type wound, deep red and raw mucous membrane that was horribly painful.
See? Mine did not look text book then, now they do. I am sure I had smaller ones before, but thought I may have scratched myself.
Please get one biopsied. If you can't get in, at least take pictures.
Do you have positive pathergy? A bump after a blood draw? Take pictures of it.
I once got a small pimple at the site but dt dismissed as too small. I also had a streak of blood under my skin when blood taken a massive red reaction to a plaster around it. My skin generally gets hypersensitive at times. Red raised patches to plastic on bra straps appeared for a stint. Does this mean anything, rheumatologist wasn't interested by that. I do believe I have sticky blood because my severe long lasting migraines have significantly reduced in the 8 weeks I've been taking 75mg aspirin! I even think my cognitive has improved slowly since then. It had gotten so bad I genuinely thought I might have early onset dementia.
There are a number of skin conditions associated with Behcet's. Check them out. Be your own, best medical advocate.
Behcet's is rare, most doctors will help you, but you need to do the research and print it out. It is also associated with many allergies, to foods, perfumes, etc.
I use ALL unsented products. I am careful to not over soap my laundry, because of skin irritation.
If you have any questions, please ask.
Best of luck to you,
Do you have a link? Please x
There are many sites, plus I don't know how to do links.
Google "Behcet's skin problems"
Look for .gov, in the end of address. National Institute of health etc.
Or google "Doctor Yazici, Behcet's skin problems"
He is also on you tube.
Sorry, that is the best I can do for you. I am rapidly losing my vision.
Best of lick to you,
PS. Have you had a Brain MRI? There are "silent" cases of NEURO Behcet's. I had" near normal " neuro exams. I only found out I had "an estimated 40-70 frontal lobe, white matter lesions" after headaches from a car wreck. I was misdiagnosed with MS.
First misdiagnosed in 1976, Fibromyalgia/ Chronic Fatigue. I knew that was not right.
Go to Behcet's.com, see if "this is you".
Hope this helps, Cindy
Hi I did get a mri which showed no Vasculitis. But I understand this can be the case and still have neuro behcets. Is this what you mean by silent? I think the trouble I have is my gp referred me to neurology based on my migraine becoming and staying for longer. My memory issues were sidelined, not even mentioned by neurologist. I had to ask him before I left. He didn't even know rheumatologist put an mri in. I'd asked for my results. He dismissed my memory issues as anxiety. I don't think the doctors are communicating very well. I'm not sure if anyone knows the full picture. My hp never mentioned my concerns to the neurologist about behcets. To be honest it seems not a single Dr will consider Behcets in my case & I don't know why! The answers I've had, everyone gets acne it's very common, ulcers are so common. You have no serious disease, thus was said while I was bleeding from stomach / bowel losing iron. Then I got doctor Denying I was bleeding despite all evidence of continuous iron loss and no periods. I haven't been able to communicate very well with my memory problems this hasn't helped. Yes, I feel like I am a nutter because that's how the medical world makes you feel by not believing you.
Thankyou once again x
Thankyou, that's helpful. I thought I'd read alot about behcets but there are much more skin problems than I realised, even many like mine! Also interesting is my mam suffers like me and her dad & 2 brothers died young heart attacks 40s. Apparently that can happen in males with behcets. I read on medscape. I had only read on the behcets charity before and assumed that it covered everything. What's interesting is the amount that my signs and symptoms resemble behcets. Thankyou for your help.
I do hope your eyes are OK?? Was a little worried, really hoping you just meant your eyes tired. My friend temporarily lost her sight but got it back. I do hope you are well? Xxxx
Look at Behcet's on You Tube. They have a "Behcet's channel" and patients are on there with their stories, separate from Behcet's channel, also Neuro Behcet's.
I have permanent blurred, double vision. And optic-neuritis and bouts of Trigeminal Neuralgia. I can't track back and forth while reading. My right eye says, "screw this!" and moves toward the out side. "Wall-Eyed", opposite of "cross-eyed". I keep right eye closed, but eyes track together. The right retina is thinning.
Opthalmologist says, " your EYES are fine.," meaning - it is a Neuro problem.
This is the nature of Behcet's
I embrassred my diagnosis. I believe in "know thine enemy."
I have studied it, literally thousands of hours, on line. I try to follow new studies and treatments. Now hormones, male and female, are found to be useful.
I will rest my eyes, that helps.
You have to be your own, best medical advocate! This disease is so rare - my emergency room doctors ask me,",What is it, What does it do, and How do you spell that?"
You need to know those answers! So, check out You Tube.
Look for Dr. Yazici. (Any thing Dr Yazici)Addressing the Behcet's conference.
I am always happy to help you. If I don't know something, I will research it and get back to you.
Cindy you are so kind, Thankyou. I am sorry you have this eye problem. I will read and learn. I'm trying cut wheat from my diet but I keep accidently messing it up because my brain not working. I will look at the u tube stuff and take prints to consultant. I mean, really, how can you forget you struggle to walk far?? What planet am I on? X
Wheat is in Everything! I am allergic and make everything from scratch. I make my own bread. You have to be "wheat- free" for a week before you do the challenge. (Adding it back in to your diet.) I will get back with you tomorrow. Do not try to learn it ALL in a few days! Most of us have been learning it for years.
Best to you, Cindy
Thanks for all your help, looks like I got some reading to do. I hadn't considered drug induced, that's interesting & worth considering. The only thing that makes me believe in myself is that one GP clearly confidently diagnosed Vasculitis, my body has always told me it's not happy I'm best judge & I've never been wrong. You're so kind taking the time to read my posts and I will definitely be reading & speaking to GP. She agreed yesterday to write & tell rheumatologist that my walking so bad & can we proceed with biopsy regardless.
It seems to me that it's going to take a nasty bout of ill health before someone helps me but I pray I'm wrong. No one seems to want biopsy anything, to commit to anything. I'm sure they just think I'm an exaggeration. I've read stories when people had hidden Vasculitis, the Dr wasn't worried about patient presentation seemed fine until finally they checked something and there was alot of damage going on, much to their surprise. I think unless Dr sees on the day a big gaping hole with blood pouring out, they just think your fine. Sorry rant. Am starting my usual bug after bug winter thing now which gets me down. I'm told I'm run down. I eat healthy ish now, lots protein fruit n vege. Naughty treats. I'm like tell me what's running me down, please
I posted more info for you.
I had a mentor and friend, Frank Ebert, he has passed away. May he rest in peace.
I do this because he answered questions and helped me keep my sanity after my diagnosis.
This is how I pay respect to his memory, and help others keep their sanity.
Maybe you will carry the torch, and donate your time and answer questions.
Just reaching out to someone can help.
His sign off was,
That's very kind, am sorry he passed away. Yeah I managed to answer a query awhile ago now and I felt better knowing I may gave helped someone. Unfortunately at the moment my energy very low and have a toddler to look after not to mention the repeated chest infections and tonsillitis and unfortunately no family support. I am lucky, as my husband us good. But you are so right we all have to help each other; I must not forget that. I don't go on this site that often, I got terrible memory and focus issues. Times I've even forgotten I posted a question! I forget my lunch and before carers came it was sometimes 2/3pm before I ate or drank! I am lucky to have this help.
Thankyou for your information. I had my husband print the info. I think this is where I gone wrong I never took the print out facts to actually show. X
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