rheumy appointment - update

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Ginny
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   Posted 8/20/2008 4:45 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.  Thank you everyone who prayed for me.  I needed these tests to happen quickly, and they are. 
 
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


MJLD
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Date Joined Jul 2007
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   Posted 8/20/2008 5:12 PM (GMT -7)   
Ginny,
I am so thankful you don't have to wait forever to have your stuff done. That is so frustrating! Rest up for tomorrow! Hopefully, answers and solutions to your "mystery" are forthcoming! God Bless, Judy

PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 8/21/2008 7:28 AM (GMT -7)   
Ginny,

I'm excited for you! You have a doctor who listens and it sounds like she's determined to find out what's wrong with you. This must be as frustrating for the doctors as it is for us because each of us presents with different symptoms, all weird and vague. It took a couple of years for my DH to finally "get" that I was sick and not depressed, and even now he sometimes forgets. Your prayers were answered. Now for the wait. Thankfully it won't be long before you have the results of the body scan and I'm sure you'll let us know the results right away. Hopefully it will reveal some answers.
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Lynnwood
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Total Posts : 7018
   Posted 8/21/2008 9:24 AM (GMT -7)   
I'm *so* glad your doctor listened and is being proactive in working on discovering what the issue is. You'll have to post your bone scan for us all to admire! :-)

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 8/21/2008 12:30 PM (GMT -7)   
good luck on the tests you found a doctor who actually tries to find answers fast
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone when absolutely necessary, various vitamin/mineral supplements


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/21/2008 1:43 PM (GMT -7)   
Hahaha, Lynnwood, I was going to set up a link for you all to take a peek at!!  I'm serious!! That is so funny you'd suggest doing that.
 
The scan was VERY interesting.  They told me at the start of it that it would only take about 20 minutes to do if there was little to nothing to "zone in on". Well.... My scan took 2 hours!!!  They decided to zone in on every single joint in my body..... Not quite sure how to take that! LOL.  So I have close ups of everything.  about 30 images.  I was able to take a peek at the computer screen for a couple of the scans.  All the scans were visible and it was super cool to see my skeletal system that way.  I saw a lot of "activity", or "black spots" which indicate something going on with bone or tissue around it.  That's what the technicians were whispering.... I could hear them talking to each other and they mentioned that word a few times.  They seemed very interested in my neck, upper back area, my kees, feet and ankles. They took extra scans of those areas.
 
So we'll see what comes of this next Thursday.  If I can get copies of the scans, I will DEFINITELY post them for you all to see. 
 
I'm really sore today. My lower back is screaming at me at the top of its lungs. I'm actually really glad to be flaring right now. It might make those scans more legit!
 
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


MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 8/21/2008 2:46 PM (GMT -7)   
Ginny,
That does sound so interesting. I'm hoping you'll have some results soon! Judy

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/21/2008 3:22 PM (GMT -7)   
Hi Judy!
 
I have to wait a week. I'l get the results when I see my rheumy next Thursday.  I'm very eager to see these scans.  I hope she'll give me copies! In the meantime, I'll listen to my feet, back and neck jabber fowl language at me.....
 
Love ya!
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


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 8/21/2008 4:54 PM (GMT -7)   
(((((((( Ginny )))))))) Long week, eh?

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 8/21/2008 6:16 PM (GMT -7)   
Good luck Ginny. I hope they can find some answers for you. I'll be waiting to hear what the answers are.
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 8/21/2008 6:35 PM (GMT -7)   
(((( Ginny ))))) I am glad they were able to get you in so quickly for the scan. It sounds interesting, I will have one on my next appt in October, now I kinda know what to expect. Take it easy and get some rest. Hugs
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 8/23/2008 2:57 AM (GMT -7)   

Hey Ginny, I had to track ya down on the board to find out what happened with your appt. So tell me what do you wear to a bone scan? Also could you please explain how the bottom of your back screams at the top of it's lungs? I means no wonder you got problems! smhair

love ya

carol


 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/23/2008 8:32 AM (GMT -7)   
LOL.  Carol, I swear my body has its own "life force" outside of my own brain.  My lower back and neck and feet scream obsenities at me all day long.  They're not a happy bunch. mad
 
The bone scan prep is super easy.  I didn't have to change out of my pants!  I had to put a gown on instead of my shirt because I had buttons down the front that sometimes show up on the images. So you can wear practically anything and not have to change!!  It was awesome.  I could even leave my bra on! 
 
A nuclear dye is injected into an arm vein when you first get there.  Then you have to wait 2 hours for the dye to get in the blood stream and into the bones.  I went the a mall nearby for some lunch while I waited.  You have to drink a pile of water too.  Makes the dye light up better on the scans.  I drank over a litre of water and had to pee twice during the scan, hehe.... It's very relaxing. You just lay on a table and thing moves over top of ya.  I had a nap. 
 
I'll post a new thread regarding my results when I get them next Thursday. Sorry you had to search for this one!!  Hope you have a good day Carol.  I'm thinking of you!!
 
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


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 8/23/2008 9:03 PM (GMT -7)   
Hello Redrose 77,
 
Can you share what caused your PTSD?
 
Thank you in advance for any thing you can share
Hester

Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 8/23/2008 9:08 PM (GMT -7)   

Hey Ginny,

Glad to hear your test went so well.  I have had something similar to this.  My entire body was scanned, but it was ordered because I have swollen lymph nodes around my esophagus.  They were afraid that the breast cancer had returned.    But the only thing that has ever shown up is the swollen lymph nodes.

Good Luck

hester


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 8/23/2008 11:24 PM (GMT -7)   
Serina, aside from a childhood one therapist appologized to me for because I fell through every crack in the system which only left me with emotional issues that only bordered on PTSD, I lost 2 children to an undiagnosed metabolic disorder. I was the one who did CPR both times too which made it worse. It is rather complicated truth be told. It took more than it would have for a lot of people and less than it would have for some for me to develop full blown PTSD. All I can say is I am so glad I was not born 100 years ago.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone when absolutely necessary, various vitamin/mineral supplements


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 8/24/2008 10:54 AM (GMT -7)   

Hey Redrose77.

The trauma for you was your children dying?  I have ptsd too.  But not so bad now as it used to be.  I had to learn what a trigger is, so that I could avoid those situaions.  It is not so bad now as it used to be. 

Sometimes it could be a color, or a sound, or something you see around you can be a trigger.

I honestly do not know what I would do if my children died.  It is the most horrible thing that can happen to people I think.  You are one strong lady.

Hester


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/24/2008 12:10 PM (GMT -7)   
Sorry guys, but how did my topic about my rheumatologist appointment and tests turn into a discussion about post traumatic stress?
 
If you have a question to ask someone that is in regards to something totally different than the original thread, please start a new topic.  This not only gets confusing for the people reading all the posts, it's frustrating for the person who started the topic and is looking for support.
 
Sorry if I came across annoyed.
 
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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/24/2008 3:51 PM (GMT -7)   
Ginny,

Are you counting the days till Thursday? I know that the waiting can be nearly unbearable and staying busy is all I can do to keep my mind off things. I hope you're doing ok and that you're having a good weekend.

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 8/24/2008 6:36 PM (GMT -7)   
If you have a question to ask someone that is in regards to something totally different than the original thread, please start a new topic. 
 
Will do.
 
Hester

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/24/2008 6:48 PM (GMT -7)   
Hi Patty,
 
Oh yes, I am counting the days. They're going by quickly which is good I guess, LOL.  I've developed two new symptoms that appear to be in line with RA (thanks to our newest member Maudrine, who brought them up blush ).  I have a dry, annoying cough, and a raspy voice. I had no idea those could be related to RA.  I'm struggling today with intense pain everywhere.  I did have a 10 hour wedding to photograph yesterday.  That doesn't help my situation....  Thanks for checking in with me!
 
Hester, I apologize if I came across as a wanker in my previous post. (((((HUGS))))).  Thanks so much for your encouragement and for being here.  I think I had a prednisone/pain induced moment of frustration.  My apologies......
 
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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/24/2008 7:00 PM (GMT -7)   
Ginny,
Any test that I can do with my bra on, is a good test! I just love my bra! :) Do you ever just feel violated with some of these tests and procedures? I'm a modest person by nature and it's tough to have to disrobe sometimes! ANYWHO...I'm sure you will be anxious this week until your results come in! I know I would. Let us know ASAP!
Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/24/2008 7:07 PM (GMT -7)   
Hahaha, Judy.  YES!  I'm modest also.  Not having to disrobe for the scan was AWESOME.  Mostly because I'm so sore it's hard to get my pants off and on, and my bra!  Reaching around to hook it up.  Pu-leeze!!!  So yes, bone scan = GOOD.  You should all get one, just for kicks!!  We can compare our results and try to guess who's knees we're looking at shocked . It can be the new trivia game!!! OHHHHHHH.  The wheels are a turnin' tonight!!!!
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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