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I spent all of last year 2015 with breast cancer. Went through chemo and radiation, and surgeries. I had over five months of weekly chemo AND prednizone IV drips. With my kind of chemo, I got painful, tingly neuropathy in my fingers, hands, arms, and toes, feet, lower legs. When chemo was done, and I was no longer getting the prednizone IVs each week, the neuropathy started to get a lot worse. I also hurt ALL over...every joint in my body hurt like I had been just hit by a truck. Walking, getting up from a chair or bed, typing, putting on a sock---you name it, I was in pain with it. My oncologist said that I wasn't "supposed" to be having this pain, and said she was not going to subscribe me oxycodone anymore (a medicine which did help a bit.) I went to my primary care doctor who did set me up with pain meds, thankfully.
Last month, I had sudden, uncharacteristic swelling in my ankles, and difficulty getting a breath, so I went to the hospital E.R. Lung scans showed what they told me was probably metastasis in the lungs. Yikes! I called my oncologist who set me up with a lung specialist who did a lung biopsy. Thankfully--it was not cancer, but it was positive for sarcoidosis. I'd never heard of it. After reading a lot about it, much of my life's symptoms made sense. I had severe "arthritis" in many joints at age 28...weird, huh! Through my 30s, I had several bouts of come-and-go arthritis in the joints. And now, I can't get a good breath, I have these weird sores on my leg that look like open wounds and they itch off and on. I have continued periferal neuropathy and severe (like I literally cry!) joint pain all over my body.
The Lung doc says the leg sores probably aren't sarcoidosis. When I asked why he thinks that, he said because the sarc. sores are sore, not itchy. Hmmm....Everything I've read says they itch, with sarc.
When I brought up the subject of my intense joint pain, he suggested that it's probably unrelated, and probably due to my age (51), and yes, it "can" be due to sarc., but it's very rare, so he doubts that it is.
I'm sorry, but no. It is NOT normal that I cannot walk more than a few minutes at a time. It is NOT normal that I cannot get out of bed without help, or without yelling out in pain.This level of pain, all over my body--Is Not. Normal. I feel like my lung "specialist" does not know much about treating sarcoidosis. I have NO clue how to find a doctor in my town, Reno, NV, who will listen to my symptoms and help me find relief. Yesterday, I put myself on 800mg of Ibuprophen, because in the past, when I had arthritic bouts, my doctor would prescribe me this amount of ibuprohen and it actually helped. So, I thought, why not...upon taking the first dose, I felt some relief from pain. I called my Lung doc and left a msg saying I'm doing this, because the joint pain is so bad, and to call me if I shouldn't for some reason. I have not heard from him. I just feel like getting a doctor to address my issues is impossible!!
HOW do you find a good doctor in your town that KNOWS about sarcoidosis?????
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