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43219876x (@43219876x)

Grover's Disease: What works to help find relief?

Skin Health | Last Active: May 14 7:33am | Replies (1483)

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@dazlin

@gardeningjunkie ….I remember well we spoke in length about all our symptoms and remedies. I just dont post here very often, but I do check in from time to time…so I remember you very well. You've been helpful. As for MGUS related to lymphoma, I have no idea. I did specifically ask my oncologist last year, and he said I have IGG KAPPA, with very low IGM'S which are the healthy main white cells to fight infection. One thing I believe, my rashes started 1st, then I was diagnosed with MGUS. I'm sure drs aren't connecting the dots on the two, but I feel something is wrong. There's really not much more they could do for me, except monitor my bloodwork, and see derm for skin issues.
I did take photos of my body when I broke out badly, and scabbed, because by the time I get an appt I'm almost healed, so I don't think they believe how sick I felt. I dont have pain, but, I had severe fatigue, and chills…I think the papules may hurt. I'm so done with witch hazel and every topical, yes, I've eaten cilantro…not doing that every day. I even shaved the papules and applied peroxide, out desperation, or maybe I was losing my mind(no sleep)…I slept with a brush so I could scratch after hours of resisting…(mental torment). One night back in 2013, after a day the beach, I thought maybe the sun and salt water would draw out the rash. The complete opposite happened that night, so, so, bad, covered in red itchy hot bumps. I literally sat on the bathroom floor and cried…I took my shaving razor and shaved off the rash…then drenched myself in peroxide. The stinging burn was actually a relief. Looking back, I feel so bad I resorted to desperation, and did that. Thankfully, now, if that happens I've got meds and prescription cream.
Nice of you to look up MGUS, and informing me. I'm not ruling out lymphoma, because I've had enlarged lymph nodes , one surgically removed in 2014, but tested benign…all so very strange.

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Replies to "@gardeningjunkie ....I remember well we spoke in length about all our symptoms and remedies. I just..."

I understand what you mean by stinging being a relief from itching. I wonder if acupuncture has that effect- ones nerves focus on the needle prick with acupuncture and the itch is not the focus of the brain. I so get how lack of sleep will drive us insane- I would lay in my sleepless bed and plan ways to kill myself- yet that was not with GD, believe it or not the itch, sting and burning skin was worse for me with my Allergic Contact Dermatitis before I got diagnosed after having the 5 Day Extended Patch Test. Avoidance of allergens is key to controlling those rashes and sensations and surprisingly have had dramatically fantastic results giving up processed sugar and limiting natural sugar.
When I looked up MGUS it did state that it can mutate into lymphoma and also that rash could be one of the side effects. Good news you tested benign to lymphoma which is truly a concern. There was no description of the rash. Heck you could have GD along with rash effects from the MGUS.
I never tested positive to GD with biopsy, but my symptoms are classic and I do have it. Yet if you tested negative to lymphoma in 2014 you clearly didn't have it then or you would be symptomatic by now, more than just enlarged lymph nodes. Lymphoma was a big fear for me, it's a tough one. It's good you still have your blood tested, I used to have it done semi-annually but now just annually just in case the leukemia returns.
We both need to seize the day because we are surviving and our skin right now is a good as it ever will be!!!!

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