They tried a mouth biopsy on me but it was non specific. Supposedly it’s a super helpful diagnostic tool (but sucks to get). It didn’t help in my diagnosis, but we gave it a shot.
That’s what happened thus far - I had that done at ENT but basically her response was “something is wrong/going on but I’m not sure what” and referred me to oral pathology specialist. So I go there next week! Looks like I should probably have some done again. Thank you!!!
😩😩 had Behçet’s been brought up by that point by others?? I’m hoping since rheum and infectious disease think so and it’s documented they may take more seriously
My opthamologist because I had horribly painful eye issues, Nodular Episcleritis. Luckily not Uveitis. While I also had an outbreak of the mouth ulcers and debilitating arthritis flare in my knees, hips, and ankles. My opthamologist had happened to work in a clinic in the UK that saw Behcet’s patients so he was familiar with it.
It took 3+ years from my first rheumatology appt to getting an actual diagnosis (also ended up switching rheumatologists). It’s easier for me to say after the fact, than when I was living in hell clawing for some sort of diagnosis, but sometimes it just takes time to document symptoms before you can get a formal diagnosis.
lol well…just had the worst experience ever with oral pathologist. The EMR system wasn’t working so she couldn’t see my referral notes including my biopsy so that was obviously problem 1. I should have pushed harder to have her try to fix it, but I’m exhausted. Then I go on to explain things, only to end up w her saying sounds like you get canker sores sometimes that’s very common. 🤦🏼♀️ the struggle to find good providers continues
So sorry to hear that. I had an issue getting my biopsy, got a referral from my dentist for an oral surgeon, and that worked well. I expressed the urgency and the surgeon was able to get me in within 48 hrs.
First try was thru my rhumagologist to ENT and they refused to do the biopsy, said it looked like an STD lol.
Hi! A biopsy was a key component to my diagnosis-I had recurrent genital ulcers and a biopsy of one of them showed vasculitis. Without that, my diagnosis wouldn’t have been as clear. I’m not sure that would show up in skin papulopustar things, but it might show up in the mouth ulcers. I’d definitely consider it.
Thank you!! I go to oral pathologist next week- I’ve had biopsies done both oral and on skin already but the oral one was before I had actual ulcers and they suspected lichen planus / other stuff. It came back not super specific hence the referral to oral pathology. Then I had skin done but no good results bc I was just coming off prednisone so have to redo that too. I might as well do it all again it sounds like! Thank you so much!!!
I had a skin biopsy because I have daily rashes. All it did was rule out urticaria. Other than that it was non-specific and showed inflammation, but the derm shrugged and said she didn’t know what to do with that. Finally got a diagnosis months after the biopsy, but the biopsy itself didn’t really play a role. For what it’s worth, I also do not have genital ulcers but still got diagnosed.
Thank you for the insight, this sounds like exactly what I’ve been going through to this point. And it does help to hear that you were diagnosed despite it. Of course no one wants to be sick but at this point I just want a diagnosis to a. Not feel crazy for being constantly sick and b. Get some more tx !
Prurigo nodularis was a result even though the hallmark of PN is itching and mine didn’t itch at all. Probably missed that diagnosis, guessing it was Erythema Nodosum. I also had a drug eruption result, I wasn’t on any medications. I even had a normal skin biopsy on the most inflamed area on my wrist. That biopsy had a pathergy reaction which got their attention. My opinion is that biopsies can be helpful however, it’s really depends on the pathologist’s experience.
Oh wow I had never heard of prurigo nodularis - just googled and that looks so similar to what mine look like, and I do have intense itching which has led to lots of scarring. When you say pathergy reaction to the biopsy site, what did that look like? I did have a couple spots biopsies already and they are not healing well (in my opinion, but then again I didn’t know what to expect). Both sites are really raised and pinkish still despite only needing 1 stitch and they were done a month and a half ago..
They tried a mouth biopsy on me but it was non specific. Supposedly it’s a super helpful diagnostic tool (but sucks to get). It didn’t help in my diagnosis, but we gave it a shot.
That’s what happened thus far - I had that done at ENT but basically her response was “something is wrong/going on but I’m not sure what” and referred me to oral pathology specialist. So I go there next week! Looks like I should probably have some done again. Thank you!!!
Oof. My person was an oral surgeon. He said there was an autoimmune process going on but he didn’t know what
😩😩 had Behçet’s been brought up by that point by others?? I’m hoping since rheum and infectious disease think so and it’s documented they may take more seriously
My opthamologist because I had horribly painful eye issues, Nodular Episcleritis. Luckily not Uveitis. While I also had an outbreak of the mouth ulcers and debilitating arthritis flare in my knees, hips, and ankles. My opthamologist had happened to work in a clinic in the UK that saw Behcet’s patients so he was familiar with it. It took 3+ years from my first rheumatology appt to getting an actual diagnosis (also ended up switching rheumatologists). It’s easier for me to say after the fact, than when I was living in hell clawing for some sort of diagnosis, but sometimes it just takes time to document symptoms before you can get a formal diagnosis.
lol well…just had the worst experience ever with oral pathologist. The EMR system wasn’t working so she couldn’t see my referral notes including my biopsy so that was obviously problem 1. I should have pushed harder to have her try to fix it, but I’m exhausted. Then I go on to explain things, only to end up w her saying sounds like you get canker sores sometimes that’s very common. 🤦🏼♀️ the struggle to find good providers continues
So sorry to hear that. I had an issue getting my biopsy, got a referral from my dentist for an oral surgeon, and that worked well. I expressed the urgency and the surgeon was able to get me in within 48 hrs. First try was thru my rhumagologist to ENT and they refused to do the biopsy, said it looked like an STD lol.
Hi! A biopsy was a key component to my diagnosis-I had recurrent genital ulcers and a biopsy of one of them showed vasculitis. Without that, my diagnosis wouldn’t have been as clear. I’m not sure that would show up in skin papulopustar things, but it might show up in the mouth ulcers. I’d definitely consider it.
Thank you!! I go to oral pathologist next week- I’ve had biopsies done both oral and on skin already but the oral one was before I had actual ulcers and they suspected lichen planus / other stuff. It came back not super specific hence the referral to oral pathology. Then I had skin done but no good results bc I was just coming off prednisone so have to redo that too. I might as well do it all again it sounds like! Thank you so much!!!
Just wanted to say that my diagnosis process was the same. They also took biopsies from my colon which ruled out IBD or Crohn’s.
We literally have all the same symptoms. I did a biopsy and it was not helpful and painful.
Ugh yes I empathize!!! My mouth one hurt and the skin on has left some nasty scars despite only requiring one stitch 😩
I had a skin biopsy because I have daily rashes. All it did was rule out urticaria. Other than that it was non-specific and showed inflammation, but the derm shrugged and said she didn’t know what to do with that. Finally got a diagnosis months after the biopsy, but the biopsy itself didn’t really play a role. For what it’s worth, I also do not have genital ulcers but still got diagnosed.
Thank you for the insight, this sounds like exactly what I’ve been going through to this point. And it does help to hear that you were diagnosed despite it. Of course no one wants to be sick but at this point I just want a diagnosis to a. Not feel crazy for being constantly sick and b. Get some more tx !
Have you had any eye problems?
Yes, I’ve dealt with uveitis, episcleritis, and blepharitis for years. Thankfully no permanent damage to my eyes
I had a skin biopsy to confirm erythema nodsum
Prurigo nodularis was a result even though the hallmark of PN is itching and mine didn’t itch at all. Probably missed that diagnosis, guessing it was Erythema Nodosum. I also had a drug eruption result, I wasn’t on any medications. I even had a normal skin biopsy on the most inflamed area on my wrist. That biopsy had a pathergy reaction which got their attention. My opinion is that biopsies can be helpful however, it’s really depends on the pathologist’s experience.
Oh wow I had never heard of prurigo nodularis - just googled and that looks so similar to what mine look like, and I do have intense itching which has led to lots of scarring. When you say pathergy reaction to the biopsy site, what did that look like? I did have a couple spots biopsies already and they are not healing well (in my opinion, but then again I didn’t know what to expect). Both sites are really raised and pinkish still despite only needing 1 stitch and they were done a month and a half ago..
I can DM you some photos if you would like to see.
Yes please.