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HI Michele.
I didn't realize you had sarcoidosis. I am fairly new on here and I guess you found out before I started posting.
I am so sorry to hear that. My Mom was diagnosed with it 7 years ago after she had a PET scan that showed her whole body was covered in cysts. I think the majority of them are in her lungs. They thought at first that they were malignant and she had cancer, so I guess sarcoidosis was a pretty good diagnosis compared to cancer! She was diagnosed about 4 months before I was diagnosed with IBS. She also has fibromyalgia. She is amazing. Hardly ever complains. She's my hero.
She gets massages every week and says that really helps her a lot. She also goes to her pulmonologist every 3 months for a chest x-ray and bloodwork. I'm pretty sure she is in remission. At least, if she's not she doesn't say a lot about the pain. Sometimes she says she hurts. Mostly her knees and hands, but I think her whole body aches and she just plays tough.
Anyway, you are in my thoughts and prayers!!
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FancyMom
IBS-A,Constipation predominant, GERD
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Yes, it must be a little easier to at least FINALLY know what is wrong! I've watched at least part of your struggle with that. I hope you continue to feel better, Michele, I think of you often!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Hye Michele -
What kind of infusions do you get? Is it chelation therapy?
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FancyMom
IBS-A,Constipation predominant, GERD
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I'm glad the infusions are still helping, Michele, and that you and Will are doing well. That's good to hear after all you've been through.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Re: Lisa Marie
#332485 - 07/15/08 11:11 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Sorry girls, I haven't checked in for a few days, work has been busy!! It does make it much easier at least mentally knowing exactly what is wrong with me! Its much easier to wage a battle when you know who your enemy is!
Fancymom, sorry to hear about your moms dx of sarc. It took the docs almost 4 years to figure out what was wrong with me. When they finally did cat scans, they thought that I too, had cancer, lymphoma. The oncologist actually came in my hospital room with the hospital Chaplin!!!!  Than they said, well, lets do a biopsy just to make sure. Why they didn't do the biopsy first is a mystery.
I first presented with multiply miscarriages, most unlikely due to the sarc and probably due to blood clots even though my clotting tests are normal. I was recently treated for two pulmonary embolisms and 3 deep vein thrombosis, all types of blood clots and usually the pe's are lethal. While going through the fertility work-up and treatments, I started to have swelling and pain in my hands and feet, they said it was hormones. Than the constant fatigue, they said stress. Than I got pregnant for a 4th time with twins and while pregnant I got a raging case of uveitis (eye inflammation.) they called that a fluke. Lost the twins and blew up everywhere like a blow fish, than I was just depressed. Many, many, many doctors later and many wrong dx later, I finally know what I have, chronic progressive sarcoidosis.
For me, its painful almost everyday, my breathing is very limited, I have constant extreme fatigue, memory problems, the list is very long. At this very minute, I sit at my desk hooked up to a heart monitor. They are trying to figure out how much damage it has already done to my heart. I get remicade treatments for it every 4 weeks and things are improving a bit. I am glad your mom is in remission and hope she stays there!!
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Taking it one day at a time.....
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See my post above, the infusions are remicade. Its not fda approved for the use of treating sarcoidosis but the leading university hospitals are using it and all the studies show remarkable improvement. I have been getting them every 4 weeks since February and I have seen improvement but not as much as others have. I am hoping the longer I am on the remicade, the better I will continue to get.
If you or your mom are interested, this is the message board I belong to for my sarc, its been very helpful!
http://www.inspire.com/groups/stop-sarcoidosis/new/active/
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Taking it one day at a time.....
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Re:Thanks Sand
#332488 - 07/15/08 11:17 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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It certainly makes things much easier now that Will and I are at least on the same page. Things are not perfect but we are both trying very hard and I believe that things will work out for us.
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Taking it one day at a time.....
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Wow. Lisa Marie, you are a brave girl! I am so sorry you have been dealt such a cruddy hand...but what an inspiration you must be to your family and friends. I am sure you have a good support system. How's hubby? Understanding? I hope so.
Are your Remicade treatments helping?
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FancyMom
IBS-A,Constipation predominant, GERD
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Thanks for the info, Michele!! I will definitely pass it on to my Mom.
Keep your chin up, girl. I'm praying for a full recovery for you!! 
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FancyMom
IBS-A,Constipation predominant, GERD
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Glad to hear those hands are loosening up a bit! Mine are still swollen and sore but not as painful as they were. I think the remicade is helping!
I'm sporting a heart monitor today, 48 hours worth! These sticky pads are driving me buggy, I can't even stand tags in my cloths let along 5 big sticky pads with electrodes all hooked up to a 10 pound do-hickey I get to carry around! 
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Taking it one day at a time.....
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