Author: Sharon R. Milosh (---.dhcp.oxfr.ma.charter.com)
Date: 03-05-07 01:44
I was diagnosed with Sarcoidosis in June after complaining of pneumonia, flu like symptoms. I have suffered for many years with chronic fatigue, muscle pain, nausea, dizziness, malnutrition, depression, irritability and was diagnosed years ago with Fibromyalgia, I have undergone x-rays, sonograms, cat scans, MRI's, biopsies, and all kinds of oscopies. I'm waiting results for a colonoscopy at this time. I told my doctor they might do better by just doing an autopsy. The bad symptoms started in March, the doctor kept telling me I was getting older and had the flu, I developed an annoying cough that wore me out and after insisting that something was wrong, it was May and I had enough, long story short, after all kinds of tests, x-rays, I got a call from my doctor saying I either had Hodgkins lymphoma or Sarcoidosis. I had the biopsy in June, it was Sarcoid. I find it rather strange, I am 56 years old, my girlfriend is a year older and she got it 5 years before me and her husband's friend had it for years, we all come from the same town and went to the same school, a town with a naval shipyard that had a nuclear sub base, less than 10 miles away. I was born and raised in Vallejo, CA and Nevada was not far and the government loved testing the nuclear bomb at that time.
I have heard that Sarcoidosis may also be caused by a chemical environment. I am now living in Massachusetts, the company I worked for closed Friday, December 15, 2006. My employer was unbelievable and worked with me and was supportive, there were times I could not get to work until almost noon. I would be able to work for less than 2 hours and need a nap. I am on unemployment now, but the real world doesn't let you be sick, I have to get another job, but am worried as to whether I will have a problem getting to work on time, etc. I suffer IBS, have for years, it has gotten worse, and the back doctor would not see me because I was late, but, I had IBS just before I left and made me late. Fallon is great coverage if you don't have to use it. Anyway, I have had enough and will not take any more tests, they can do nothing for me.
I have been on organic foods, enzymes, Acidophillus, and Wobezym N, NADH for depression, works really good, and other natural enzymes. I was not aware that I should not take fish oil pills, just started taking fish oil pills with borage. Will stop immediately and take back to Whole Foods. I eat wheat, gluten and dairy free foods, I found a kickin' rice cheese, American and Jalapeno pepper jack tastes just like cheese, I use Rich's non-dairy creamer, it's great, tastes just like milk and use it in my cereal, wheat, gluten free, coffee and tea. I love spinach it's a bummer because it produces vitamin D. That's what's nice about the non-dairy creamer, I called the company to be sure they didn't add it, they don't.
My doctor tried me on predisone for a week, I did not want to take it, but, tried because he wanted to see if it helped. It did not. I refused to take it, the lung specialist said he would not have prescribed it, it would burn itself out. Not!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have requested to see Dr. Berman in Boston, he studied Sarcoid for over 20 years and is head of the Sarcoid Clinic there, my attending physician thought it was a great idea and recommended it and I already was told Fallon had an agreement with the doctor and the clinic and would probably be allowed a tertiary visit. I got a letter, they declined, my husband wrote a ripping letter telling them they will let me see him, they recommended 2 other lung specialists. What a bunch of morons.
It's not bad enough I have to deal with the symptoms I mentioned, my hair was falling out in bunches, my ankles, feet, toes, hands and fingers were swelling, I ran fevers and night sweats, my hands and the bottom of my feet break out peel, crack, bleed, itch like hell. I have scabs that come and go on my head, body, I've been breaking out in rashes for approximately 5 years. The first time it looked like I was tattooed. It was the strangest rash like chicken pox bottom of feet, up inside of arms, up my back, no one knew what it was the dermatologist asked if I was around a farm he thought I might have anthrax, he didn't want to touch me. I still have the break outs not as bad as that but very uncomfortable. I notice if I watch my diet close, it's not as bad.
I want to find someone who knows what the blue blazes they are doing and not treat me like a claim that's approved or denied. I've come to believe that the doctors take a hipocritic oath as they just give you man made drugs that just make you sicker and it's not all their fault as they are forced to see patients like cattle. The system sucks and I'm done with it. I have decided to move on. I started looking at some of the symptoms and found this got excited and thought maybe there's hope.
I really wonder if Sarcoid isn't infectious, I found out from a girlfriend that her cousin was diagnosed about a week before me, her cousin lives in New York. It was a rare disease at one time, what made it blow up?
Glad I found you.
Sharon R. Milosh
Sharon R. Milosh