Why don't they just do a biopsy?
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Hello – I have been on this site many times discussing my Lymphomatoid Papulosis. At my last Derm visit, I showed the derm the bumpy rash that was in between and under my breasts. I told her it was my LyP. She said "Oh, that's just Grover's disease". I'm like what the heck! 2 rare skin diseases! My LyP has been (fingers crossed) in remission for a bit. The Grover's disease isn't as irritating to me as some other people have. I currently am not putting anything on it. I use Clobetasol for my Lymphomatoid Papulosis. Hopefully, the Grover's will stay under control enough that I am not constantly itchy!
Hi MZ- I would most definitely get a second opinion. My husband's brother has multiple myeloma, which is very serious. (and can also be hereditary- so any siblings should be tested (bloodtest). He was diagnosed about 6 years ago and had surgery involving stem cells, etc. Quite serious. He has been in remission. He goes to Mass General or Brigham and Women's in Boston, but he lives in Rhode Island. Prayers and hugs for you! Kathy D
Hi Danielle- I'm so sorry that you 've joined our LyP club. Did the dermatologist do a biopsy. Do you have a really bad case of it. Methotrexate is a chemo drug and certainly wouldn't be my starting choice. Are you in the United States? I would definitely get a 2nd opinion. You didn't say how old you are. I am 56 now and misdiagnosed for 9 years because they didn't do a biopsy. Did they tell you what stage you have? I think I have Type a, but back then they didn't have stages. Some people get it worse than others. 3 recommendations – definitely get another opinion. I use Clobetasol when they itch. I have been in remission for a bit. I know what my triggers are. There is a group on Facebook called Lymphomatoid Papulosis- join the group. Everyone supports one another- it's really great. Some people take it in stride- you still have to live you life. Others flip out especially if their children get diagnosed. You can always post here as well on Mayo's site. See you on FB. Good luck! Kathy
Hi Samantha- I'm so sorry for all you are going through at such a young age. Have you had your surgery yet? Have they given you a diagnosis? I was misdiagnosed for 9 years before demanding a biopsy and got the LyP diagnosis. Right now I have about 10 small lesions on me. If they get itchy I have Clobetasol foam (like it better than the cream- it's greasy and more like ointment) to put on them. When I did not know what they were- I would continue to scratch them- which made more come out. So, I think I am doing well. You have quite a bit going on; where I don't even know what to give you for advice. I hope your diagnosis was a good one, and prognosis as well. I believe more people have LyP -and that it is not so rare (they say 1-2 people in a million). I believe people just get misdiagnosed and are dismissed by their doctors. When my PA in my dermatologist office biopsied me and got the results- she shared with me that she had the same looking papules on her and the DERM dismissed her with dermatitis. She biopsied herself and learned that SHE has LyP. I saw her yesterday because I have also had Basal Cell, Squamous Cell & Melanoma in-situ (Skin Cancer) and have a full body exam twice/yr. I also have bloodwork and Chest Xray annually. My PA told me that her 1st cousin (female) just got diagnosed with LyP. There is a private group of us on Facebook that have LyP with 206 members. I think you should request to join- many of the members have a lot more going on than me and can hopefully give you some good information. I hope your parents are being a lot more supportive. You need someone to advocate for you. What state are you in? Check out http://www.facebook.com/groups/lymphomatoidpapulosis. Good luck and keep us posted!! Kathy in Rhode Island