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What do you do for Neuropathy itch?

Skin Health | Last Active: Oct 22 1:02pm | Replies (314)

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@smbryce1

Doctors really need to stop saying things like “Sick people itch” my goodness. I had my tonsils out and so did my ex’s son because they were essentially collecting strep throat and every time I’d start getting better I’d get it again. He was asymptomatic lucky him, but was a carrier reinfecting people wherever he went. That and being told “it’s all in your head” or “you must be making yourself sick” when they don’t know what else to test for or how to resolve symptoms are probably on the top 10 playlists of inane things really smart people say but should not.

If you haven’t yet, you might want to look into mast cell disorders. There are several types, and itching is part of all of them as can be other symptoms, and some people with mast cell disorders have other comorbid immune issues/deficiencies or genetic mutations causing them symptoms some have had their whole lives and just accepted as their norm priori to diagnosis. I had daily i hives most of my life. Dermagraphia, muscles becoming highly fatigued immediately after or during exercise, frequent migraines, often nausea or vomiiting after eating, cyclical IBS, exercise induced asthma, passing out during certain sports activities like mid flip in the pool, pain in my joints, skin, and deep in my bones, dislocations, feeling weak or fatigued, knees going out when i got excited, enough injuries just from doing normal kid things like climbing trees or trying to hang upside down, they threatened to report my mom for child abuse and told her she had munchausens by proxy, had been told when I went away to college that i had an eating disorder because my mom had been told i wasn’t allergic to the things she’d been avoiding giving me, because they didn’t show up as “true” IGE allergies, so she didn’t bother telling me I was or what she had been avoiding giving me, so I later ate things in the cafeteria not knowing they were triggers, would have an allergic reaction i did not recognize as one and puke in the trash can on my mad dash for a restroom, was told my GI pain was gastric reflux, and other things which turned out to be all explained by Primary MCAS, EDS and POTS as well as the preexisting diagnosis of Hashimotos thyroid disorder, sleep apnea and diabetes type 2 or 3.

I don’t list these off for people to feel sorry for me or what not, i have a wonderful productive and connected life. I mentioned them in case others are having similar symptoms and being blown off by doctors or told to just suck iit up, or “get used to it” as I was any time I or a loving relative sought answers. I went for 43 years without diagnosis just dealing with the symptoms because of doctors who didn’t know what to treat for so mistreated my mother or me. I had life threatening anaphylaxis multiple times and finally I refused to take the confused doctors as gods anymore and pursued answers until I got them in 2014 because i was having allergic reactions every time I ate, was exposed to the smell of hand sanitizer or certain foods being cooked, had gone into anaphylaxis when someone lovingly put essential lavendar oils on my pillow trying to help me sleep, and was in the ICU after almost needing a blood transfusion because I was passing blood after a “Perfect storm” of triggers one day. Where they kept almost killing me with hand sanitizer and various antibiotics i didn’t need, because they were just trying to help me and did not know how or why. Thankfully someone on facebook recognize my symptoms and told me to look in to Mastocytosis. Nurses at the mastocytosis society helped the doctors stabilize me enough to send me to mayo where ht why did I tests and decided i had some kind of mast cell disorder and helped stabilze me further, allowing me to fly to see a doctor who literally had hundreds of mast cell patients instead of a handful. (Sadly he has partially retired and stopped treating adult patients and is only focusing on pediatric) but thankfully i have doctors now who work together to keep me at my best health and give me advice on the tough questions like since I’m anaphylactic to flu vaccines should i risk the covid I vaccines or wait...etc.

Hope others find their answers no matter how bizarre or rare they are.

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Replies to "Doctors really need to stop saying things like “Sick people itch” my goodness. I had my..."

wow, you have gone through so much, and yet you are utterly inspirational and uplifting! Thanks so much! LoriRenee1

Hello smbryce1, I am Sunnyflower. Wow, what a journey you've had! Please don't ever feel badly or that you have to explain yourself here on Connect for talking about your symptoms no matter how many you have or have had. We're here to listen, lend support, compassion and hopefully have some additional information for you. It sounds like these things were incredibly difficult for you and I'm just so sorry you've had to endure so much for so long!

I worked in health care for a little over 20 years and highly believe in specialty. I have many specialist myself. I try to encourage people to ask for referrals to specialty. It's a patient's right. And if your PCP won't give you one, see another who will. Doctors don't think outside the box very often like they needed to with you and with me, per my own specialists!! Patients are always so intimidated by doctors but they don't know everything and working with so many doctors over the years, I have come to learn that they should NEVER feel any kind of negative way if their patient gets a 2nd or 3rd etc. opinion. If they don't like it, they have an ego problem and shouldn't be practicing medicine in the first place. After all, they constantly consult with one another about their patients when they need advice, imput/direction. I have some rare things and I know it can take years to get diagnosed. That and a lot of painful diagnostics!!! UG!! I wish you all the best. We here care very deeply about each other. I wish you relief, the comfort of God and His peace through Christ that passes all human understanding and a very special Christmas! Many blessings, Sunnyflower

This is very interesting because I too suspect MCAS and I'm constantly itchy and it feels more internal than external although I have rashes documented as pruritus in various places of my body. I would be interested in seeing this doctor that you see. I just switched to health insurance that will allow me to go out of network if I need to.