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Posts (21)

Fri, Mar 20 4:37am · Grover's Disease in Skin Health

I would get a biopsy. I have a rare skin disorder called Lymphomatoid Papulosis- which usually appear on my abdomen, stomach, back. I also had many red bumps under my breasts and assumed it was the same. When I saw Derm- she said oh no- that's Grovers Disease. So I said – PLEASE do a biopsy and she did and sure enough I have 2 rare skin disorders. Sweating definitely brings out both of them. Tight clothing, stress, I have to wear cotton shirts- this is for the Lymphomatoid Papulosis. I haven't figured out the triggers yet for the Grovers. Right now, Grovers in remission. Facebook has a Grover's Disease support page – you should join it. Kathy

Nov 2, 2019 · Cutaneous T Cell Lymphoma in Blood Cancers & Disorders

Hello- I know I'm 2+ years after your posting this, but I have a rare skin disease called Lymphomatoid Papulosis. I have had it for almost twenty years, but was misdiagnosed for 9 years. Finally I demanded my derm do a biopsy and it came back as LyP (abbrev). They say 1-2 people in a million have it, but I think people are just getting misdiagnosed. I have learned what my triggers are and can say right now I am in remission. I would have red bumps or papules on my stomach, abdomen and back. Occasionally a few would pop up on my arms or legs. They were SOOOOO itchy! I would scratch where they would bleed a bit, scab over and leave a tiny scar. When I was finally diagnosed with it- they knew so little about it- there were no "types". Now, after a lot of research, I believe I am type A. There is a facebook page for it if anyone thinks they may have it. Before my definitive diagnosis, I was told I had dermatitis, allergy to Bounce fabric softeners, Folliculitis. I know my triggers- Stress is the biggest. I wear cotton clothes only- nylon, poly, silk, rayon- forget it! A jacuzzi tub with the jets of water spraying directly on my back- outbreak. My last back massage- felt great, but as I was getting it I could feel the bumps begin to erupt on my stomach- sure enough there they were afterwards! So- I attribute that to either the oil she was using – but I think it was the direct constant friction of skin to skin contact. When I have outbreaks I use Clobetasol foam (the cream is like ointment-very greasy). Some people have other types (B-F) and have it much worse than I do. They say people with LyP have a 20% greater chance of developing Lymphoma. For now- I am good, and no outbreaks! Good luck to all!

Aug 27, 2019 · Non Specific Esophageal Motility Disorder Caused by Beta Blockers in Digestive Health

Hi Darlia- I know you posted this 2 years ago- but I'm just seeing it now. How are you doing with the IEM? I have had an endoscopy and esophageal motility test which shows that my lower esophageal sphincter is "tight as a drum" said the doctor. So, I am on 40 mg Prilosec in am and 240 mg Diltiazem- which is a calcium channel blocker and somewhat relaxes the LES. And, then I take 300 mg of Ranitadine at night. The meds are helping- but it has been 7 years like this now.- and still feels like there is something stuck in my throat. I also know the proton pump inhibitors do something to the Intrinsic Factor- which produces Vit B12. My sister has to give herself a Vit B12 shot every month. Does anyone have any thoughts or comments on this?

Aug 8, 2019 · Grover's Disease in Skin Health

Why don't they just do a biopsy?

Aug 4, 2019 · Grover's Disease in Skin Health

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!

Jun 3, 2019 · Multiple Myeloma in Blood Cancers & Disorders

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

Feb 14, 2019 · Lymphomatoid Papulosis in Skin Health

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

Oct 12, 2018 · Lymphomatoid Papulosis in Skin Health

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