So I went in for the results of another biopsy of the "spots" on my arms and what they told me is that I have a very rare condition called Lymphomatiod Papulosis - 1 in a million people get/have this condition. There is a 20% chance of it turning into an associated systemic lymphoma...
This may sound absurd but I would much rather be dealing with a lupus rash than this. Today isn't a good day.
Hi, I'm sorry to read this. Any chance of developing lymphoma is undesirable, but at least it's on the lower side... and still not a good thing, of course!
This sounds silly, like over-reaching, but did you get a copy of your biopsy results? I erred in not getting full copies, which one should get (in case one moves, etc.). Then from my EIGHTH dermatologist (yep, I saw that many), I learned that the really precise stuff isn't usually on the summary cover sheet, but on the attachments, and that the best diagnostic test hadn't been done.
If I were you, I'd want to know exactly which findings define Lymphomatoid Papulosis---then check to see if those findings jive with what you've read about the condition. I'm mainly wondering because your Dx is so rare! My suburban dermies totally BLEW my rash, which is NOT especially rare. But if you saw a top-flight specialist, you may have no lingering questions.
Do you have to follow-up at intervals? Bye & best wishes, Vee
When I went in for the appointment, the PA stood in the hallway for a good 15 minutes trying to figure out how to tell me. He said that the results hadn't come back yet which was odd so he called the lab and this dx was what they told him over the phone. They sent the sample off to another lab for more specific or further testing. I should have some hard copy results by next week.
I'm consistent in getting copies of my medical records because no one can coordinate my care like I can. If I see a new doc and they say they hadn't gotten records from so and so, I can just pull those records out of my bag and we can move along to the important stuff.
From what little i've been able to read on LyP it seems consistent with the stuff i've had. I dunno.... its al insane!
To what kind of doctor is this PA an assistant? GP, dermatologist, dermatopathologist (that's a dermatologist and pathologist, meaning dermie who does his own labwork), rheumatologist, or some other kind? Go for the most specialized you can, is my advice & hope.
You sound much smarter than I was when I was seeking help, so BRAVA! And keep at it. Hugs to you, Vee
The way I see it is that my time is precious and every minute we waste by waiting for records to get here or there is time that my body could be fighting itself and possibly destroying itself. If there is any way I can keep things moving along then I try to do it. That's why I stay on top of my records, keep copies with me, take them to EVERY appointment, etc. All of these doctors see so many patients that they can't be entirely responsible for what goes on with me. I want to be able to make the most of the appointments and I try to make that as easy as possible for the specialist I'm seeing. Generally I have all relevant materials separated out the night before an appointment. I keep a folder for each specialist in a backpack at all times. Most of the ladies at the front desks of the majority of the docs I see know that I'll be asking for copies from the previous visit and have it ready for me by the time I check out.
The PA is a derm assistant and he's quite experienced. I've quizzed him! LOL I went through all the tests I wanted out of this last biopsy and while he did say that he thought it was nothing more than a photosensitivity, he assured me that he would have everything checked. I told him about the other doctors I see and we discussed what testing would be relevant in relation to my other symptoms. He told me that he has the utmost confidence in the lab they use - actually said they are "among the best in the country, very thorough". I don't expect this to be the end all be all of results and I will continue to pursue this, particularly because it is so rare that I'd like another lab to go through the process start to finish as well. I think he felt a little bad when I went back in and it turned out to be more than just a "sun allergy" and that's why it took him so long to figure out how to tell me about it... Then again, if it's really as rare as everything says, how would he have been able to recognize it? Ok, I'm just rambling now...