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)

Reply
 
Thread Tools Display Modes
Old 11-19-2013, 09:35 PM #31
vbeck vbeck is offline
Junior Member
 
Join Date: Nov 2013
Posts: 8
10 yr Member
vbeck vbeck is offline
Junior Member
 
Join Date: Nov 2013
Posts: 8
10 yr Member
Default

Hang in there Vrae, Hope you find a new pain doctor that will help you.
vbeck is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Vrae (11-20-2013)
Old 11-20-2013, 09:37 AM #32
Vrae's Avatar
Vrae Vrae is offline
Member
 
Join Date: Apr 2011
Location: Denver
Posts: 703
10 yr Member
Vrae Vrae is offline
Member
Vrae's Avatar
 
Join Date: Apr 2011
Location: Denver
Posts: 703
10 yr Member
Default

Quote:
Originally Posted by vbeck View Post
Hang in there Vrae, Hope you find a new pain doctor that will help you.
Thank you so much. Me too and I'm still working on it. Thanks hon!
__________________
CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
Vrae is offline   Reply With QuoteReply With Quote
Old 11-20-2013, 01:59 PM #33
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
Default

Quote:
Originally Posted by Vrae View Post
Thank you so much. Me too and I'm still working on it. Thanks hon!
Obtain a copy of the report that the doctor issues related to your appointment. Examine it closely for errors, often dirtballs such as him will state that certain exams/tests were performed that weren't just to justify their exam fee. Make a list of all the errors/misstatements that you find in his report - not just the lies from the visit, but the inaccuracies of his diagnosis compared to your previous docs.

PREPARE a detailed letter outlining all of the discrepancies that you found. Then file a report with your State Medical Board of Review. Report the bastard.

Until we start sticking up for ourselves, NOTHING is going to happen, and these guys are going to continue to bully more pain patients the way he did you.

If anything, you will get a feeling of satisfaction of having done SOMETHING right. All the best to you. I've had the same thing happen to me here in RI. It's such a ROTTEN feeling. Please take care. I hope you find a doc that cares. xoxo Sandy
SandyRI is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brambledog (11-20-2013), ginnie (11-20-2013), Vrae (11-20-2013)
Old 11-20-2013, 02:40 PM #34
Vrae's Avatar
Vrae Vrae is offline
Member
 
Join Date: Apr 2011
Location: Denver
Posts: 703
10 yr Member
Vrae Vrae is offline
Member
Vrae's Avatar
 
Join Date: Apr 2011
Location: Denver
Posts: 703
10 yr Member
Default

Quote:
Originally Posted by SandyRI View Post
Obtain a copy of the report that the doctor issues related to your appointment. Examine it closely for errors, often dirtballs such as him will state that certain exams/tests were performed that weren't just to justify their exam fee. Make a list of all the errors/misstatements that you find in his report - not just the lies from the visit, but the inaccuracies of his diagnosis compared to your previous docs.

PREPARE a detailed letter outlining all of the discrepancies that you found. Then file a report with your State Medical Board of Review. Report the bastard.

Until we start sticking up for ourselves, NOTHING is going to happen, and these guys are going to continue to bully more pain patients the way he did you.

If anything, you will get a feeling of satisfaction of having done SOMETHING right. All the best to you. I've had the same thing happen to me here in RI. It's such a ROTTEN feeling. Please take care. I hope you find a doc that cares. xoxo Sandy
Hey Sandy,

I did (just today) receive a copy of my chart notes. Ticks me off (understatement of the year) just reading them. Yes, I will report him.

So get this. I call up and leave a message for MR to request my chart notes. They call me back. Without even verifying that it was me, or asking me to fill out a release or anything they fax them over to me. When I get them, there is an additional page of info that isn't my info. Two people's FULL names, DOB, address, genders, and all their insurance info, like detailed insurance info about covered benefits. What looks to be something that their office probably requested from the insurance company or something. unreal!
__________________
CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
Vrae is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ginnie (11-20-2013)
Old 11-24-2013, 02:35 PM #35
Mslday's Avatar
Mslday Mslday is offline
Member
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Mslday Mslday is offline
Member
Mslday's Avatar
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Default Proposed new diagnostic Budapest Criteria CRPS

I'm terribly sorry to hear of your shabby treatment and the lack of medical care where you live. I'm quite shocked to read all you have gone through. You are very brave and I truly hope you find the right team to start helping you. Below I've listed (along with the link to the PDF) the criteria for diagnosis which is currently being used internationally.

Budapest diagnostic criteria for diagnosing CRPS.

General definition of the syndrome:

CRPS describes an array of painful conditions that are characterized by a continuing (spontaneous and/or evoked) regional pain that is
seemingly disproportionate in time or degree to the usual course of any known trauma or other lesion. The pain is regional (not in a specific
nerve territory or dermatome) and usually has a distal predominance of abnormal sensory, motor, sudomotor, vasomotor, and/or trophic
findings. The syndrome shows variable progression over time

To make the clinical diagnosis, the following criteria must be met:

1. Continuing pain, which is disproportionate to any inciting event

2. Must report at least one symptom in three of the four following categories:
  • Sensory: Reports of hyperesthesia and/or allodynia
  • Vasomotor:Reports of temperature asymmetry and/or skin color changes and/or skin color asymmetry
  • Sudomotor/ Edema: Reports of edema and/or sweating changes and/or sweating asymmetry
  • Motor/Trophic: Reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)

3. Must display at least one sign at time of evaluation in two or more of the following categories:
  • Sensory:Evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or temperature sensation and/or deep somatic pressure and/or joint movement)
  • Vasomotor:Evidence of temperature asymmetry (>1°C) and/or skin color changes and/or asymmetry
  • Sudomotor/Edema: Evidence of edema and/or sweating changes and/or sweating asymmetry
  • Motor/Trophic: Evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)

4. There is no other diagnosis that better explains the signs and symptoms.

For research purposes, diagnostic decision rule should be at least one symptom in all four symptom categories and at least one sign (observed at evaluation) in two or more sign categories.

I've been away from the forum for sometime but recently returned to explore ketamine infusion options. I have continued for years now with lidocaine infusions along with patches as a main source of pain control.I'm seeing new doctors at a pain clinic and need to discuss if I should stay on this treatment or consiider alternatives.

Much love to you all.
__________________
"When humans learn to be gratefully present every moment, they become angels. It’s not the wings that make the angel, but the message of courageous presence and creative acceptance, no matter what the moment brings: “Fear not!”" Gratefulness.org
Mslday is offline   Reply With QuoteReply With Quote
Old 11-24-2013, 04:07 PM #36
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
Default Hi Mslday

If you get a chance to do the Ketamine infusion, please let all of us know how it went. I have read a few articles in Medical journals that report good outcomes. I had Ketamine infusion in my spine twice, and it did help before I had the surgery. I wish you the very best outcome for CRPS. ginnie
ginnie 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
The Day I Am Cured AnnT2 Parkinson's Disease 2 12-28-2012 12:18 PM
I am considering myself cured from TOS :) LillyBella Thoracic Outlet Syndrome 3 07-18-2012 12:50 AM
Cured again! reverett123 Parkinson's Disease 19 01-26-2011 02:33 PM
Would you try it if you could be cured? Nicknerd Myasthenia Gravis 8 01-14-2010 11:21 AM
This man may be cured of MS BBS1951 Multiple Sclerosis 2 08-22-2009 06:41 PM


All times are GMT -5. The time now is 07:27 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 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.