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Old 07-12-2007, 12:04 AM   #1
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Sarcoidosis... ?

My 15 yo daughter had lab values come back with low levels of D3 and elevated levels of D 1, 25 hydroxy. (She was 76.1 - Ref Range is 25.1-66.1) She also has confirmed granulomas on her lungs and a rash on her shins that comes and goes. Arthritis in her ankles and knees, chronic migraines, chronic fatigue...

I *strongly* suspect sarcoidosis. What other tests need to be done to confirm?

 
Old 07-12-2007, 07:51 PM   #2
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Re: Sarcoidosis... ?

my pcp ordered a series of blood test on me and one of the test showed a high lever of angiotensin 1 converting enzyme. this suggest sarcoidosis. maybe you should suggest to the dr to have this ordered on your daughter. also a cat scan of the lungs.sarcoidosis can appear anywhere in the body, but mostly in lungs.

 
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Old 07-13-2007, 12:26 AM   #3
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Re: Sarcoidosis... ?

She has confirmed granulomas in her lungs. Thank you so much for suggesting the test.

This is so frustrating. Because her vit D3 was low, she's been taking supplements and the dr has her doing light therapy. Now I find out that, if she does have sarcoidosis, the vit D could be why she's getting sicker.

 
Old 07-13-2007, 06:12 PM   #4
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Re: Sarcoidosis... ?

i know that you must be very worried about your daughter. if this is sarcoidosis, it appears that it was caught early and that is good. she will be able to have normal long and properous life. i have children also and i know i would be upset. let me know when you find out more. be encouraged and GOD BLESS.

 
Old 07-14-2007, 09:37 PM   #5
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Re: Sarcoidosis... ?

Thank you. Right now I'm worried about her present state and worried that she might decline. I'm also worried about her future. Will she be considered "uninsurable"? How much will her meds cost? Will this affect future pregnancies or threaten her ability to become a mother?

I guess that worrying is my job. Heck, I'm a mom. I sometimes think I do my job just a little *too* well! lol!

 
Old 07-19-2007, 08:01 PM   #6
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Re: Sarcoidosis... ?

hi military mama, sorry i have not posted in a few days. how is your daughter and have you found out any more info about sarcoidosis? i am schedule for cat scan tomorrow and hope to find out something soon. you have a right as a mother to worry about the health of our children, so you are being a great mother to look out for and take care of her. i pray that all will be well with you and your family. i can fully understand financial concerns and i know that it is GOD who is able to keep us from falling so just put your trust in HIM.

 
Old 07-20-2007, 10:06 AM   #7
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Re: Sarcoidosis... ?

Dr #1 wasn't interested in my suggestions. Dr #2 is interested, but wants to wait to find out how the supplements effected her D 1,25 levels. (Another month to get that information) She *did* get her first dose of steroids. (kenalog injection) Her migraine still won't budge, BUT her knee pain, asthma symptoms, trouble sleeping, nausea, muscle spasms and much of her joint pain has GONE AWAY in the 2 days since she's had the shot. Also, she doesn't have the urinary urgency, chronic fatigue (she's really perked up!) or skin tenderness issues) She's feeling MUCH better already.

I read that it's supposed to take about 7 weeks before symptoms of excess Vit D start to improve, so we'll see how she feels then. (I'm PRAYING that her migraine goes away.)

Thank you for caring. Now that her pain is improving, I'm starting to relax.

 
Old 09-10-2007, 06:37 PM   #8
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Re: Sarcoidosis... ?

I was told I had Sarcoidosis in 1998 and yes with God you all will get through this. I just wanted to share with you I went through the headaches are migarines and I was given everything prescription wise. One day I was lead to try Excedrin Tension and in 30 minutes it was gone, and I went through this for months, and in a matter of minutes I got a relief from something over the counter. So if you haven't tried that try that for your daughter. Or Excedrin Migrane. Again with Christ all things are possible so trust Him through and through. Take care!

Last edited by Lisaraye47; 09-13-2007 at 01:49 PM. Reason: typo in website name

 
Old 09-14-2007, 08:14 AM   #9
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Re: Sarcoidosis... ?

Military Mama, HI! I read about your daughter, and am sorry to hear she is going thru so much at such a young age. I also read she is feeling better. That's good. I was diagonosed with sarcoidosis in 2000. I had the chronic fatigue and a terrible cough, but no headaches. Something she may want to check with the doctor on the migranes is, have her checked for seretonin levels, I guess they have something they can give her for that and her migranes might go away. My girlfriend had terrible migranes and once she had her seretonin leveled out she never had another migrane. If I can I will find out what she took or may be still taking.

 
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