Guest guest Posted November 12, 2007 Report Share Posted November 12, 2007 Rose, that’s it, we should see if about the Indian burial thing, I lived so many places growing it, it would kill me to follow up on that one, but it sounds good. I think it is hard to say why we got this disease, I for one believe it’s genetic, I have two third cousins in Norway with Sarcoid, they are blood related through my Mom who was dx with Sarc in her 70’s (Thank God she has not had any problems with it) but what made it become active? I only know that when I push myself it’s worse for sure! My son said I should quit MK and sit in my chair with my warm blanket all day, boy would I be crazy if I did that, but it might come to that, the insurance company denied the Humeria yet another time, however, my husband said we will continue to appeal it. I have a friend who works in that part of the Insurance company, she is an RN who goes to hospital’s to see if the patient really needs to have more time, she told me to go see a Rheumatologist and have him order the Remicade for the Sarcoid Arthritis, has anyone done anything like that? She said there is always a way around, but just hard to find them. My husband says this Dr. will have to authorize it as we have disproved all the claims he made as to why I couldn’t have the drug? You know the hardest part of all of this is “time” everything thinks we have time to wait but really we don’t, the longer we wait the worse we are and the more we have to fight, oh well such is life. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Saturday, November 03, 2007 10:46 PM To: neurosarcoidosis Subject: RE: [sPAM]Re: Re: flu shot Kat, I don't want to seem argumentative, but it seems to be human nature to want to connect events. I can think back to all kinds of activities & situations that happened just before NS & then systemic sarc reared its ugly head--stress (but no worse than many previous times), Halloween, travel to Texas (many previous trips, as well as living there), working in a hospital (but had worked in hospitals for 30 years), got a cat (had cats before), and so forth. Heck, I lived for much of my childhood in a house that was built over an old Indian burial ground, as well as living in many houses with moldy basements & rotting porches. But no one else in my family got sarcoidosis. I sure don't pretend to know the answers, or even assume that doctors and researchers are on the right track. I just don't want anyone to make crucial decisions about their health care based on random events or coincidences. Does that make sense? Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 " How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these. " ~ Washington Carver To: Neurosarcoidosis From: katskreations1 (AT) aol (DOT) com Date: Sun, 4 Nov 2007 00:02:27 -0400 Subject: Re: [sPAM]Re: Re: flu shot I was just reviewing the sarcinfo site and a few people mentioned that they too had the flu shot and shortly thereafter started with the night sweats and a reactivation of their sarcoidosis. Maybe everyone is different. Kat See what's new at AOL.com and Make AOL Your Homepage. Help yourself to FREE treats served up daily at the Messenger Café. Stop by today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2007 Report Share Posted November 13, 2007 Marla, If you go to a Rheumatologist, like your friend said, he can prescribe it for you for the arthritis and you will get it. That is how I got my remicade ok'd by the Ins company. Unfortunatly, I was not able to continue with the remicade, but I DID get it. Please try going through your Rheumie.........good luck. Hugs, Darlene NS Co-Owner/Moderator Re: [sPAM]Re: Re: flu shot I was just reviewing the sarcinfo site and a few people mentioned that they too had the flu shot and shortly thereafter started with the night sweats and a reactivation of their sarcoidosis. Maybe everyone is different. Kat See what's new at AOL.com and Make AOL Your Homepage. Help yourself to FREE treats served up daily at the Messenger Café. Stop by today! Quote Link to comment Share on other sites More sharing options...
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