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 07-12-2007, 09:23 AM #1
lisashea lisashea is offline
Junior Member
 
Join Date: Oct 2006
Location: Mansfield, MA
Posts: 45
15 yr Member
lisashea lisashea is offline
Junior Member
 
Join Date: Oct 2006
Location: Mansfield, MA
Posts: 45
15 yr Member
Default article in local paper

To those of you who knew me here and on the braintalk forums from 2001-2005, I'd like to say THANK YOU for being my support system and source of knowledgable information about RSD. It is because of you that I learned and tried so many different things. It is because of you that I continued to fight until I found my answer. There are no real words to truly express my gratefulness to you.

To those of you who don't know me from before - I just want to say that you have found a great place with wonderful, supportive, loving people who know a ton about RSD( amungst many other things!)

This article was posted in a local Massachusetts paper last week - you all know me as Lisa Shea but I am now divorced and back to using Nash so the Lisa Nash in the article is me. My goal of the interview was twofold - 1. to share my nightmare misdiagnosis story and 2. to bring about awareness of RSD to the general public.

Never give up hope in finding your answers!

Peace,
Lisa

http://ledger.southofboston.com/arti...ews/news04.txt
lisashea is offline   Reply With QuoteReply With Quote

advertisement
Old 07-12-2007, 01:11 PM #2
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default

To read Lisa's story, click to "News" on the page banner.

And Lisa, the part about your daughter is horrific. I can only imagine her terror upon receiving that diagnosis, thankfully it was corrected in short order.

Mike
fmichael is offline   Reply With QuoteReply With Quote
Old 07-12-2007, 08:40 PM #3
JOAN_M JOAN_M is offline
Member
 
Join Date: Dec 2006
Location: MASSACHUSETTS
Posts: 439
15 yr Member
JOAN_M JOAN_M is offline
Member
 
Join Date: Dec 2006
Location: MASSACHUSETTS
Posts: 439
15 yr Member
Default

Thanks For The Article And Your Great Work. I'm Glad To Hear You Do Not Have Rsd And Are Doing Well. Joan
__________________
Courage ... doesn't always roar, sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
JOAN_M is offline   Reply With QuoteReply With Quote
Old 07-13-2007, 02:42 AM #4
junk4myemail junk4myemail is offline
Member
 
Join Date: Mar 2007
Location: Near San Diego, CA
Posts: 230
15 yr Member
junk4myemail junk4myemail is offline
Member
 
Join Date: Mar 2007
Location: Near San Diego, CA
Posts: 230
15 yr Member
Default

I have to put in my two cents. I feel as though this kind of article could be a negative thing for RSD patients.

For those people reading this article, should they come across someone who does truly have RSD, they will now second guess the person and say, "oh, you just need to see a chiropractor."

It's having to go around and convince more people that this problem truly does exist.

When I had my accident, I bruised my elbow bone. It did NOT feel like my knee, and now my hip, feel. It felt like a bruise, a deep bruise. My arm and all were sore. It took a couple of weeks, or more, to heal. But NOT many many months/years. I saw a chiropractor, he said he didn't even want to touch me, not until he saw an MRI or X-ray, neither of those show nerve problems.

I am happy that she had a different diagnosis than RSD. What I was hoping to read after I saw her post was what helped her get it into remission, not be made to feel like it's possible we might have something else wrong and were misdiagnosed.

PLEASE KEEP IN MIND-THIS IS MY OPINION. I am not trying to rustle feathers.
__________________

.

.
CHRISTINE
.



.


I AM NOT A DRUG SEEKER,
I AM A PAIN RELIEF SEEKER.
junk4myemail is offline   Reply With QuoteReply With Quote
Old 07-13-2007, 11:13 PM #5
Goodn'Plenty Goodn'Plenty is offline
Member
 
Join Date: Sep 2006
Posts: 147
15 yr Member
Goodn'Plenty Goodn'Plenty is offline
Member
 
Join Date: Sep 2006
Posts: 147
15 yr Member
Default

Lisa ,what you went through is absolutely horrific
I think what you are doing as a result - ensuring that people get good quality medical care is great/necessary and it shows that the trials and tribulations of life can bring us a new purpose and life goal.
I think the disconnect here comes from the fact that RSD is one of the most under diagnosed and/misdiagnosed conditions in the medical community today.
Many of us have gone from one doctor to another without getting any answers to our litany of symptoms; and sometimes much to our surprise come away from these appointments with blank stares of disbelief from these so called experts; and worst case scenario - that this is all in our heads and that we are an hysterical bunch of women( with all due respect to the afflicted men).
So for this little known disease to finally get some press ,and its content is not about it being horribly under diagnosed ,or horribly underfunded ,or just being plain horrible ,but because it was misdiagnosed not once but twice, which I am sad to say is not the norm with RSD well just doesn't sit well with those afflicted.
I am sure you can understand why it is just a little bit frustrating for those that want their stories to be told who feel that your one in a million misdiagnosis' of RSD might in some way do a disservice to a disease that is so little known-so little known that doctors can't even diagnosis it;so little known that newspaper stories make it sound that misdiagnosis is an everyday occurrence!!!!

with much hope and respect that you can help us change this situation as you have been in the trenches even if they were "faux" trenches

GnP
Goodn'Plenty is offline   Reply With QuoteReply With Quote
Old 07-13-2007, 11:30 PM #6
Desi's Avatar
Desi Desi is offline
Member
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Desi Desi is offline
Member
Desi's Avatar
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Default

Some of us should all get together and go "Public" with this beast on the oprah Winfrey, Dr. Phil show!!!! let the "outside" world and let some idiot Dr.'s know what we really go through day in and out!!!! :0(
__________________
I Will Always Believe in Poems, Prayers And Promises
Love, Desi
.
Desi is offline   Reply With QuoteReply With Quote
Old 07-13-2007, 11:41 PM #7
junk4myemail junk4myemail is offline
Member
 
Join Date: Mar 2007
Location: Near San Diego, CA
Posts: 230
15 yr Member
junk4myemail junk4myemail is offline
Member
 
Join Date: Mar 2007
Location: Near San Diego, CA
Posts: 230
15 yr Member
Default

Quote:
Originally Posted by Desi View Post
Some of us should all get together and go "Public" with this beast on the oprah Winfrey, Dr. Phil show!!!! let the "outside" world and let some idiot Dr.'s know what we really go through day in and out!!!! :0(
Definitely NOT Dr. Phil. He did a story on homeschooling and the lady who went on was on a message board I was on. He misled her and the other homeschooling moms on there. If he believes ONE way, your way won't count and you will come across looking HORRIBLE. He packed the audience with young adults who most didn't have kids yet, let alone done with their own schooling. I don't support Dr. Phil at all.

I subscribe to Experience Life Magazine and submitted a request for them to do a story on RSD/CRPS. They seemed genuinely interested. Magazine articles are a good place to start, as many of us read all types.

http://www.lifetimefitness.com/magazine/
__________________

.

.
CHRISTINE
.



.


I AM NOT A DRUG SEEKER,
I AM A PAIN RELIEF SEEKER.
junk4myemail 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
Local Man Describes Life With ALS BobbyB ALS News & Research 0 07-06-2007 05:41 PM
Local hero for local family BobbyB ALS News & Research 0 06-18-2007 05:30 PM
local horror coachV Reflex Sympathetic Dystrophy (RSD and CRPS) 10 10-03-2006 11:08 PM
new paper Annie Poo Reflex Sympathetic Dystrophy (RSD and CRPS) 0 09-28-2006 08:05 AM


All times are GMT -5. The time now is 04:55 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.