Re: Re: Mayo clinic

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I had trouble with the politics, I have very good insurance where I work and they will pay for doctors outside their contracts if they don't have one. Mayo however would not work with this, even though you sign as an outside provider that you will be paid. So the only sarcoidosis specialist is basically in my backyard but out of my reach because he belongs to Mayo. They told me I could pay upfront (around $1200 to $1500) and get my insurance company to reimburse me. Very funny guys, very funny. I'm kinda glad they were out of reach though, I would never have found the great pulmonologist I have. Neat news, I have been having to see an orthopedic surgeon because of my knee (this is not the neat news). We are going to try repair before replace. What was neat was in the x-ray behind the bad knee looks like a handful of bb's and they are some also behind the right. I don't think

this doctor has ever treated anyone with sarc & he told me he didn't know much about sarc, so I printed off some of the bone/arthritis information (not the it's a cold, sneeze twice and it's gone version) and took it to him. I told him I hoped he wasn't upset I brought it too him and he said no he would like to read it. Dude's & Dudettes, I like to have fell of my chair. Cool beans.........Conniedas97 wrote: Hi My name is , and I live in Iowa. I go to the Mayo Clinic

inRochester Minnesota, and I am very happy going there. I was diagnosed with sarcoid and neurosarcoid in 1996 up in SiouxFalls South Dakota. I had been receiving treatment there, but sincemy doctor retired up there, I had to go somewhere, where they werefamiliar with Sarcoid. I decided to go to the Mayo Clinic. I havefound them to be very knowledgeable, and very helpful in treating mysarcoid. I don't know, maybe some Mayo Clinics are different thenothers. But I would think they would be all the same, or I would hopethey would be the same.I presently take Imuran, and it is working well for me.I hope you find someone to give you the care and treatment that you sobadly need.>> I was just wondering if anyone has had any luck with

Mayo Clinic. I > have had about every treatment there is. I am now on CellCept, > Plaquenil, and Remicade. I have been on Prednisone, Imuran, > Methotrexate, Cytoxin infusions and others. I started with over 20 > lesions on by brain and the latest MRI showed more lesions and bigger. > Everyone keeps saying "you should go to Mayo". Thats all I hear. I go > to University of Michigan Hospital and I think they are doing > everything possible. I don't think Mayo has anything else to offer. I > would love some input. Anybody had any luck there?>

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My nuerologist in Detroit send me to the Mayo clinic. They were very helpful and uptodate on the latest treatments. My Doc works with the Mayo Doc on my treatment plan. He did this because he knew he didn't have the data and experience of dealing with a large number of people who had ns. I think because the Mayo clinic draws people from around the US they see more people with the disease.New question. I am on my second set of remicade. I had severe reaction but was able to complete it with a new protocol taken before I started the remicade the next time.Has anyone had an adverse response?What kind of improvements did you experience after getting the remicade?Take careConnie Griffis wrote: I had trouble with the politics, I have very good insurance where I work and they will pay for doctors outside their contracts if they don't have one. Mayo however would not work with this, even though you sign as an outside provider that you will be paid. So the only sarcoidosis specialist is basically in my backyard but out of my reach because he belongs to Mayo. They told me I could pay upfront (around $1200 to $1500) and get my insurance company to reimburse me. Very funny guys, very funny. I'm kinda glad they were out of reach though, I would never have found the great pulmonologist I have. Neat news, I have been

having to see an orthopedic surgeon because of my knee (this is not the neat news). We are going to try repair before replace. What was neat was in the x-ray behind the bad knee looks like a handful of bb's and they are some also behind the right. I don't think this doctor has ever treated anyone with sarc & he told me he didn't know much about sarc, so I printed off some of the bone/arthritis information (not the it's a cold, sneeze twice and it's gone version) and took it to him. I told him I hoped he wasn't upset I brought it too him and he said no he would like to read it. Dude's & Dudettes, I like to have fell of my chair. Cool beans.........Conniedas97 <salty (AT) smunet (DOT) net> wrote: Hi My name is , and I live in Iowa. I go to the Mayo Clinic inRochester Minnesota, and I am very happy going there. I was diagnosed with sarcoid and neurosarcoid in 1996 up in SiouxFalls South Dakota. I had been receiving treatment there, but sincemy doctor retired up there, I had to go somewhere, where they werefamiliar with Sarcoid. I decided to go to the Mayo Clinic. I havefound them to be very knowledgeable, and very helpful in treating mysarcoid. I don't know, maybe some Mayo Clinics are different thenothers. But I would think they would be all the same, or I would hopethey would be the same.I presently take Imuran, and it is working well for me.I hope you find someone to give you the care and treatment that you sobadly need.>> I was just wondering if anyone has had any luck with Mayo Clinic. I > have had about every treatment there is. I am now on CellCept, > Plaquenil, and Remicade. I have been on Prednisone, Imuran, > Methotrexate, Cytoxin infusions and others. I started with over 20 > lesions on by brain and the latest MRI showed more lesions and bigger. > Everyone keeps saying "you should go to Mayo". Thats all I hear. I go > to University of Michigan Hospital and I think they are doing > everything possible. I don't think Mayo has anything else to offer. I > would love some input. Anybody had any luck there?> Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us.