Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 04-28-2009, 11:07 PM #1
Jennelle Jennelle is offline
Member
 
Join Date: Mar 2009
Location: Washington
Posts: 100
15 yr Member
Jennelle Jennelle is offline
Member
 
Join Date: Mar 2009
Location: Washington
Posts: 100
15 yr Member
Default bad bone scan

I am scared as heck after my bone scan today.... I compared it to the last and you can hardly tell they are supposed to be my hands! Plus while I was getting it the guy asked if I had any back pain (I do and have started to have tingling in my right foot). I asked him why he wanted to know and he said because he "saw something". If it is rsd going to my legs now would it show on my lower back?-they didn't check my legs.
Jennelle
Jennelle is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-29-2009), shogan7RSD (04-29-2009)

advertisement
Old 04-29-2009, 05:22 AM #2
CRPSbe's Avatar
CRPSbe CRPSbe is offline
Member
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
CRPSbe CRPSbe is offline
Member
CRPSbe's Avatar
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
Default

Too bad they didn't check your legs, they were taking the scan anyway, so... why not? Didn't the guy say more than "saw something"? I would definitely want to know right then and there what he saw!

Don't feel too scared, the results may end up being okay or not that bad, so stay strong until you get the official results. I hope they get interpreted well, especially with RSD and all.

I remember I had a truckload of tests done, the bone scan being only one of them (actually they did that one three times).

Jennelle, when do you think you'll get the results? Do you have to wait long?
__________________
All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
CRPSbe is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-29-2009)
Old 04-29-2009, 10:53 AM #3
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
Default

Hi. I would go to a neurologist because tingling can be a form of neuropathy too. I am wondering like I said in my email if you have other conditions as well as rsd. I did have back problems for awhile but it came after my dx of PN and RSD and I was asked way before the back if I had pain there because my condition is in my legs. That is why I had a mri of my brain and spine which maybe you could suggest having. Try and I know how hard this is with new symptoms but to take a deep breath. I know how fearful I have been of spreads and though I have had it happen to parts some that I did think was rsd turned out not to be and did get better on its own. Of course it is better to have it checked out so treatment can be started asap.
daniella is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-29-2009)
Old 04-29-2009, 03:23 PM #4
ali12's Avatar
ali12 ali12 is offline
Magnate
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
ali12 ali12 is offline
Magnate
ali12's Avatar
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
Default

Hi Jenelle,

So sorry to hear that you are scared after your bone scan! I really hope that everything is OK and that whatever it is will be easy to be fixed!

I agree with what the others have said about seeing a Neurologist, just to rule out any other possibilties. Hopefully everything will turn out OK but it is important to get a second opinion if you are ever afraid of something!

I'm sorry that I can't help you that much - just know that you are in my thoughts and prayers and try not to panic too much (I know it's hard!!!) as it will only make the pain worse!!!

Please keep us updated when you can and if you ever need anything, I am here for you!
__________________
To the World you may be one person, but to one person, you may be the World.
ali12 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-29-2009)
Old 04-29-2009, 04:25 PM #5
Jennelle Jennelle is offline
Member
 
Join Date: Mar 2009
Location: Washington
Posts: 100
15 yr Member
Jennelle Jennelle is offline
Member
 
Join Date: Mar 2009
Location: Washington
Posts: 100
15 yr Member
Heart results

I got the results today, of coarse the rsd showed worsening since my last scan and abnormalities of my right hand (duh I told him it had spread!) He said that he wants and mri of my back and to rule out infections...I told him my back does hurt but I had an old wc claim that covered that and he said it would take too long to re-open, I tend to feel it is just swelling and showing the rsd has spread (guess a nurses' opinion doesn't count with him) especially since he won't even admit the arm spread. My left leg and foot are swollen, both feet are purple and sore, I can't wear shoes today because i can't fit into them. If anyone has rsd in legs please tell me if this fits the bill. Otherwise he is making my regular insurance pay for all the test for my back. I also had back pain with my initial injury this time and it comes and goes so maybe it is still from this, no one took mri of it though because they thought the muscle guarding was just from pain from my neck. Thanks for all of your replies everyone!



Quote:
Originally Posted by CRPSbe View Post
Too bad they didn't check your legs, they were taking the scan anyway, so... why not? Didn't the guy say more than "saw something"? I would definitely want to know right then and there what he saw!

Don't feel too scared, the results may end up being okay or not that bad, so stay strong until you get the official results. I hope they get interpreted well, especially with RSD and all.

I remember I had a truckload of tests done, the bone scan being only one of them (actually they did that one three times).

Jennelle, when do you think you'll get the results? Do you have to wait long?
Jennelle is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-29-2009)
Old 04-29-2009, 10:06 PM #6
SBOWLING SBOWLING is offline
Member
 
Join Date: Mar 2009
Location: Ohio
Posts: 310
15 yr Member
SBOWLING SBOWLING is offline
Member
 
Join Date: Mar 2009
Location: Ohio
Posts: 310
15 yr Member
Default

Quote:
Originally Posted by Jennelle View Post
I am scared as heck after my bone scan today.... I compared it to the last and you can hardly tell they are supposed to be my hands! Plus while I was getting it the guy asked if I had any back pain (I do and have started to have tingling in my right foot). I asked him why he wanted to know and he said because he "saw something". If it is rsd going to my legs now would it show on my lower back?-they didn't check my legs.
Jennelle
Hello Jennelle,

If you have an old back injury that wasn't properly fixed. Over time it could have gotten worse and one of your disc may being interferring with a nerve running down your leg.
I hope your doctor can help you or referr you to someone who can.
Take care,
Sherrie
SBOWLING is offline   Reply With QuoteReply With Quote
Old 04-30-2009, 09:25 AM #7
ali12's Avatar
ali12 ali12 is offline
Magnate
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
ali12 ali12 is offline
Magnate
ali12's Avatar
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
Heart

Quote:
Originally Posted by Jennelle View Post
I got the results today, of coarse the rsd showed worsening since my last scan and abnormalities of my right hand (duh I told him it had spread!) He said that he wants and mri of my back and to rule out infections...I told him my back does hurt but I had an old wc claim that covered that and he said it would take too long to re-open, I tend to feel it is just swelling and showing the rsd has spread (guess a nurses' opinion doesn't count with him) especially since he won't even admit the arm spread.
I'm sorry that the bone scan showed a worsening of the RSD! I really hope that you can get some relief soon and you are in my thoughts and prayers.

I agree with what Sharrie said that if you had an underlying back problem that hasn't been fixed, it could be causing problems with your legs. A close friend of mine had an herniated disc in her back and she had a lot of leg turn and swelling. The Doctors diagnosed her with RSD just after I was diagnosed but they now beleieve that it could be the back problems creating the pain and other symptoms in her foot. Never be afraid to tell your doctors of any new symptoms - I know it is scary at times but it is important that they know to try and help you and the first time you put it down to being 'just RSD', it will probably turn out to be something else that may be easy to get fixed!!

[QUOTE] My left leg and foot are swollen, both feet are purple and sore, I can't wear shoes today because i can't fit into them. [QUOTE]

I can SO relate to that problem!! I have RSD in my left leg and both arms and my leg swells up a lot! I actually had to be hospitalised a last year as my doctor thought I had a blood clot or compartment syndrome because the swelling was so bad and appeared over night. All of the tests came back OK apart from some pretty bad tissues swelling so my doctor said it was the RSD but I think he was still really concerned about it.

My swelling goes up and down. Sometimes it can be really bad (like 3 times its normal size) and other times, it can just be "mild". The swelling has never fully gone and varies day by day and as to how much walking I have done etc. If I overdo it too much, I tend to find that the swelling goes up quite a bit.

I went nearly 18 months without wearing a shoe or sock. Mainly because of the hypersenstivity and partly because of the swelling as I couldn't get any shoes to fit. I went onto an Intense PT Program last year and they made me start wearing shoes and socks again to try and get rid of the hypersenstivity. I still have LOTS of pain when I wear my shoes but try and 'cope' with it if I can. My foot tends to swell in shoes also after a short period of time so I can only wear Ugg Boots at the moment.

Take care and i'm sorry that you are having to deal with this - just know that I understand and if you ever need someone to talk to, I am here! I hope you get some answers real soon!
__________________
To the World you may be one person, but to one person, you may be the World.
ali12 is offline   Reply With QuoteReply With Quote
Old 04-30-2009, 09:57 AM #8
CRPSbe's Avatar
CRPSbe CRPSbe is offline
Member
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
CRPSbe CRPSbe is offline
Member
CRPSbe's Avatar
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
Default

Quote:
Originally Posted by Jennelle View Post
My left leg and foot are swollen, both feet are purple and sore, I can't wear shoes today because i can't fit into them. If anyone has rsd in legs please tell me if this fits the bill.
I too have problems with shoes, my feet are always swollen, and it will vary in severity. There are days when I can't wear any shoes as even the comfy big orthopedic shoes will be way too narrow for me. The problem is, I need shoes for stability. Put your feet up (higher than your heart), that will help, especially if you do that overnight.

Right now, due to the Calcitonin, the swelling has gone down. As soon as that med can be stopped, however, the swelling will be right back.
__________________
All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
CRPSbe is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
bone density test vs bone scan numb Reflex Sympathetic Dystrophy (RSD and CRPS) 3 03-21-2008 01:48 PM
5 Phase bone scan study Sandel Reflex Sympathetic Dystrophy (RSD and CRPS) 0 12-21-2007 01:00 AM
Bone scan divergences? Sandel Reflex Sympathetic Dystrophy (RSD and CRPS) 1 10-08-2007 05:16 AM
full body bone scan? Sandel Reflex Sympathetic Dystrophy (RSD and CRPS) 8 05-07-2007 02:21 PM
Bone scan results lasalp Reflex Sympathetic Dystrophy (RSD and CRPS) 5 03-24-2007 09:53 AM


All times are GMT -5. The time now is 05:45 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.