Susie2! So funny!
#323258 - 01/26/08 03:48 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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OMG, I almost wet my pants, laughing. http://www.despair.com./viewall.html
~nelly~ 
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I just saw Medical Mysteries with sarcoidosis as the mystery disease.  The lady who had it was using an experimental drug in a test trial, but the drug hadn't been approved yet. Maybe you can look for test trials?
{{{{HUGS}}}} Michele! I'm thinking of you.
~nelly~ 
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Really??? I wonder what drug?? The only trials I can find are for the anti TNF drugs like enbrel, humira and remicaid. I have been on humira for over 1.5 years. I went to all sorts of govt testing sites and stuff looking for clinical trials.
I actually see the head sarcoidosis doc at a big hospital here in Detroit at 3pm today. Wish me luck!
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Taking it one day at a time.....
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Thanks Janey!! I appreciate the kind words!
How is the job going??
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Taking it one day at a time.....
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Good luck Michele! I don't post much lately but you are always in my thoughts!
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I wish you luck and am sending lots of gentle hugs your way. I hope there are treatments that help the problem and don't cause other problems.
Susie
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I hope your appt. went well. Let us know. Hopefully the specialist can get you on the right meds.
Even though you're just starting to make progress you sound a lot better. It sounds like your hope is back and you have a better outlook. That makes a world of difference. Hopefully things continue to get better and better!
Is the pain decreasing? Are you still able to do some exercise? That alone can be a real mood booster. Keep up the good work!!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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Hi Michele....{{{{hugs}}}}
I'm so sorry I haven't been on the forums much to be current on all you have gone through lately. But from reading this post of yours, sounds like you are going through a terrible and trying time right now. I'll keep you in my prayers and hope all goes well. Just stay strong and keep smiling even though it may seem hard to do at times. I've posted this favorite quote of mine several times, but I'll post it here again in hopes it will bring you some encouragement and strength....
"When you come to the edge of all the light you know, and are about to step off into the darkness of the unknown, faith is knowing one of two things will happen: There will be something solid to stand on, or you will be taught how to fly." ~Barbara J. Winter
Keep flying, Michele! {{{hugs}}}
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First, I want to say thank you to all you have responded! The support means a lot to me!
The doctor was wonderful! He was caring and treated me like a real person and was compassionate. He took the time to read my chart files and really listen to me.
He is the head sarcoid doc in the pulmonary clinic at a large hospital in Detroit. Apparently the top two sarcoid dr's are from Ohio and California. He stays in contact with them to keep up on the new treatments and such.
Remicade is a drug that has been around for a few years, about 8 I think and is primarily used in Crohn's and just recently in rheumatoid arthritis. There have been some very promising studies in its use for sarcoid. This doc was skeptical so he went to Ohio to talk with this other colleague who has been using it to treat his sarcoid patients.
This other doctor had him go talk to all of his patients that day to get there responses from the drug and almost all of them said it was wonderful and has greatly improved there lives! So, my doc decided to give it a try and has had great luck with it as well.
He confirmed that all my symptoms that I have had for the last 3 years or so have been from the sarc. He was amazed at the amount of swelling I still have even after I told him that the swelling in my joints and hands is down. He said the heart problems I have been having are from the sarc as well and is setting me up with an appt at there cardiac unit.
It will be a few weeks before I am able to begin treatment as they have to get prior authorization from the insurance as its very expensive. From my understanding, I will go for my first infusion, than again in 2 weeks, than once a month from there. The infusions are done at the hospital and can take several hours to complete.
This is a big gun drug and can have some serious side effects but I am hopeful that it can give me back some quality of life!
I feel as though a weight has been lifted from me now that I have a doctor who is going to help me. I am nervous about the treatments, what if I have a reaction to them or they don't work but I am also very excited. Please keep your fingers crossed this is what I have been looking for and will help me get well! 
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Taking it one day at a time.....
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Sounds like this new doc is wonderful and will get you on the right track for treatment. I wish you well and will keep you in my prayers. {{{hugs}}}
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