Tina-Ambassador-That is a lot I too, cannot handle doctors. I have seen one doctor for 5 years because she fills my prescriptions, I find her to be of no other use, except she is nice to talk with about life. I went to the ER a couple months ago, and ended up in a circle of tests that led me back to a neurologist, who then started over with, all that I know does not work. The only good in that was I satisfied my yearly deductible in one trip, so I can let, fear of cost go. However, the problem still exists and I received no help at all. I get so depressed before I have to go to any doctor. And like you, I know more about my conditions than they do, I too have studied and studied. In this last year I helped 3 people live because the doctors were ignoring their symptoms. Sadly, one died because the doctor would not listen. To be honest after years of being a nurse, I cannot believe the deterioration of the health system. When I sit in an appointment, I can feel when my brain clicks off because I know they are not hearing me, thus knowing they are not going to help me, I don’t even try once that happens, because I do not want to become frustrated. Lol, this is about the time I ask about the picture of their family on their desk, as I know I will not be getting any help. My monthly medications are about 25K, covered by insurance, thankfully, but truth is that yoga does more for me than any of them. Last week I fell down the stairs. I just laid at the bottom in major pain and thought where will this lead? I have pretty severe osteoporosis. I worried most about not being able to do yoga because it helps with pain, depression, continence, balance, and the positivity which allows me to continue doing life, especially when every ounce of me wants to give up. Oh, I only hurt a few things, but can continue with chair yoga which keeps me.sane. Gosh, I am just rambling. I just wanted to let you know I hear you, I absolutely understand, and even though I cannot exactly know your experience, which is terrible, I can know the frustrations that accompany this seeming senseless journey, that we share.

Deb, it's a complicated answer. (I know me & PN, complicated?! Lol) So, yes it is kind of like my allergies jumped in to a dirty green pond with black mold. Yes, I'm allergic to black mold. It is not like previous years of, go outside, grab a Kleenex to go. Mine didn't stop over the winter like they would have previously. Now I have the floatation devises in my ear drums, boogers with lots of wetness, running down my throat to make it sore some days. Oh, and eyes, running or gritty inside or outside most days. I've been thru Dupixent, Rinvoq, now Adbry, and none changed any of it, really.
As to Drs .. I really, really wanna do not nice things to most of them lately. So no, it's nothing more than an itching disease, so you're fine (grrrrr). I have absolutely no training in a Drs life, other than life, kids, and getting thru. But, when I feel like I know more by my own research and paying attention to people on this website, I really question what value they provide me sometimes. Then I remember that I can't get my prescriptions without them, so, play their game and pay them, right,?.
I know, a book, so sorry so long.😹

Tina, it’s mind boggling to me that soooo many people are diagnosed with PN, & hardly anyone has heard of it & very few doctors & dermatologist know how to treat it!
It’s very frustrating to say the least!

I totally agree with you on the healthcare that’s available today.
I’ve worked in healthcare most of my life. I’ve never heard of Perigo nodularis until about a year ago. I’ve had several squamous cells removed so thought it’s what I had and they did a biopsy and diagnosed as PN. I have read research and I’ve tried everything but yes, it’s the most Life changing condition I’ve experienced.
I have an appointment next week for about the third or first dermatologist. I’m hoping he will do steroid injections into the nodules. That sounds like the only thing I’ve ever heard of that gives any relief at all..

Tina-Ambassador-Do they feel your symptoms all match allergies, or do they treat your different issues differently. I am not sure if that makes sense? Do you feel they hear you?