Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Bummer, you get a warm welcome and end up frozen. Hmm, I think we need to work on that. , sarcoidosis is not a death sentence. With the systemic involvement you are dealing with-- I would recommend that you get some MSM powder (www.puremsm.com) and take it several times a day. It's a natural mineral that we've taken out of our soils, and not replenished, not to mention that all the stuff we do to our food depletes what is there. It will help with that joint, muscle ligament pain. Hydration is also key-- you've got to get the fluids and electrolytes into balance-- so that your muscles and ligaments aren't getting to close to the nerves and shorting them out. Since sarc is an inflammatory response and we generally run low grade fevers constantly- those night sweats are part of the cycle-- and then whatever treatment option you decide-- will be easier for you. Milk Thistle also keeps the liver detoxed-- so it's a must! This is a tough disease to live with, but you do continue to live for many years with it. So please don't get into the mindset that it's the end of life. Your life will change, you'll learn to live and listen to your body--if you need to rest- rest. Do what you know to be good to yourself, and so much will come down to attitude. As for now, learn as much as you can-- peruse the ARCHIVES and LINKS, print out articles to share with your docs, and know that you have a family of 530+ people that are on the same path. We'll do what we can to help you thru the freeze. We've been there and are there ourself. Hugs, Tracie NS Co-owner/moderator FROZEN & TORN Hi folks....thanks for the warm welcome..... i'm feeling a bit overwhelmed at the moment....i thought i had a handle of this, reading everything i could get my hands on.....thinking if i just don't take any meds and find something holistic/homeopathi c that i will be fine....now i'm realizing that it may not be possible to approach this this way i'd like to....which has left me frozen....like i dont want to do anything.... like a denial....like if i dont do anything, it will just go away.......and then the fear sets in.....if i dont do anything, this thing is gonna eat me alive.....leaving my 3 babies alone.....i' m torn.....I wheeze everyday.... the pain in my ankles, knees & hips is bad....sometimes i have to use a cane to walk.....then i choke down some Ibuprofen... ..it helps....but what about those lymph nodes?....those grainy buggers on them....what are they doing?....what do i do next?....the pulmonary dr. is trying to get a PET scan approved.... my internist hasn't officially diagnosed anything.... but i know....i know what my body is doing.....he has said that sarcoid word....and talked about slitting my throat....invading my body with scopes....now what....waiting to thaw.....jamie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 > , I'm sorry to hear about your pain. it took 7 yrs. for them to diagnose what i have. slit my throat to do it. but because of that slice they found out the illness. 1st piece of advice; go see your dr. if you're not happy you're able to switch to another. 2nd don't be afraid to ask questions. write the questions down if you need to. 3rd go to this site. dr sharma an expert on sarc & neuro. www.neurosarcoidosissharma.com good luck. > > > > > > Quote Link to comment Share on other sites More sharing options...
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