rheumy appointment - update

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/20/2008 4:47 PM (GMT -7)   
Well, the appointment went okay I think.  She does believe me when I say I'm having widespread joint pain.  She took a look at  my feet and toes, ankles, and could see the swelling.  She didn't say if she thought it was RA.  She did think my toes looked like RA kind of toes, but when she did the physical exam she said the swelling and "how they felt" didn't match up with RA.  Weird.... I'm so weird....
 
I have a FULL BODY bone scan tomorrow morning!  This is cool.  If you've ever had a part of your body "bone scanned" it's pretty neat to see the results.  But the enitre body!!!!  Holy smokers, I want copies tongue .  Normally this is at least a 2 week wait to get in, but there was a cancellation that happened just before the nurse called to make my appointment, so that was a true answer to prayers!  I'm also getting xrays of both hands and feet and a wack load of blood work.  It'll be a long day tomorrow.
 
She says I'm a mystery.  Doesn't really know what this might be.  I see her again for the results next Thursday.  
 
Lots of love
Ginny 

I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/20/2008 4:50 PM (GMT -7)   
Ginny, I am glad they are being so thourough I hope they also get you some help soon.
Sj

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/22/2008 9:41 AM (GMT -7)   
My bone scan yesterday was interesting.  Here is an email I sent to my friend about it.... Easier than retyping everything!
 
 
My tests kept me busy today.  I got to the bone scan appointment at 9:30, they injected a special dye and then I had to leave and come back 2 hours later for the scan.  So I did the regular xrays and blood tests, got some lunch, then went back at 12:00.  They told me that if they only needed one image, it would take about 20 minutes to do the full body scan.  If they saw things that needed more pictures it could take up to an hour.  So that was okay..... Until they started doing the scan..... They stopped it about 3 or 4 minutes in and told me that they were going to take detailed, close up images of all my joints instead of doing one full body image..... Wasn't sure how to take that info.  So the 20 minute scan turned into 2 hours and 10 minutes..... Whoa.  They did a lot of whispering at the computer screen.  I heard them saying, "Activity here, and here, and here, and here. Let's do a few more of these areas at different angles."  I was able to see all the images on the computer for a couple of  the scans where I was sitting up.  They were big thumbnails images.  Very cool to see actually.  Oy.  I saw a lot of black spots.  Which means someting is going on.  I saw the black spots in my feet, ankles, shoulders, knees, lower back, upper back, neck.  They did extra scans on all those places.  Most people end up with one or maybe two images.  I have at least 30.   My doctor will have some very good evidence of what is going on.
 
Now I just wait for next Thursday to get the results. 
 
Ginny
 
 

I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


kaymac
Regular Member


Date Joined Jun 2008
Total Posts : 40
   Posted 8/22/2008 12:19 PM (GMT -7)   

Ginny,

I'll be anxiously awaiting to hear your results. I'm so glad you've made it thus far and have that behind you. My appt is next Thurs when you go back for your results!

 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/22/2008 12:32 PM (GMT -7)   
Thanks Kaymac!
 
That is so funny how our appointments seem to be on the same days!! Good luck next week too. Is it a rheumy appointment you have or a scan?  Sorry, I can't remember!!   I'll keep you posted for sure.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/22/2008 1:37 PM (GMT -7)   
Ginny, wow-two hours and 30 pics that is a lot. I don't think you will have to worry about people believing you with all of that going on. Do let us know the results and if they make any treatment decisions.
Sj

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/22/2008 6:16 PM (GMT -7)   
Hi Sj,
 
I agree. There is no doubt that something is wrong. I have great doctors who believe what I'm telling them.  They can also see it. I have enough visible symptoms going on now.  Yeah, at least 30 pictures. It was a long day.
 
I feel crappy today.  From my rib cage all the way down to my hip joints, I feel like I'm fused together in one big hard block.  My sacroiliitis is horrendous today.  I'm also noticing that my breathing isn't as "easy".  I get winding quickly.  That symptom has been off and on for about a month now. 
 
Got a 10 hour wedding to photograph tomorrow....Trying to stay positive, trying not to cry.  Feeling like this is the worst.
 
I'll keep you posted Sj.  Thanks for stopping in to say hi!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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