Isn't this article a bit odd?...
 

Doesn't this make it sound like this lady died from RSD? :confused: :confused:

http://iccoventry.icnetwork.co.uk/wh...name_page.html

Hi Vanessa,

I am in agreement with you. But odd is a bit of a understatement.:wink:

I am also wondering if a autospy was done? Let's hope so. I will chat later I have a Doc apppointment. Love, Roz xxx

The quarterly bulletin of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) includes a section in each issue listing charitable donations of $100.00 or more, including those listed under a separate heading of "Memoriums."

This is a sad fact of life. Hopefully, the medical options and the overall quality of care will continue to improve, to the point that this will become significantly less common than it has been in the past. That said, those of us who have been around for a while can still recall voices that are no longer heard today, and we have from time to time received confirmation as to the circumstances of the stillness.

Mike

So, if I am understanding correctly, she commited suicide?

Most likely.

p.s. And then again - in the light of Jo's immediately following post - probably not. Fools rush in, and all of that. Mea culpa.

Did you find the article that had a bit more of the story?
http://iccoventry.icnetwork.co.uk/01...name_page.html
article below-
[ Broken ankle led to tragic death
Jan 11 2007
By Hannah Murdoch

A FAMILY has launched an appeal to raise cash for medical research after their beloved daughter died following what started out as a minor riding accident.

Young mum Vanessa Cole thought little of it when she sustained a fracture in her ankle.

But soon she was enduring crippling pain and had to have a leg amputated. She had contracted a rare nerve disease.

Just three and a half years later, she suffered a blackout in the bathroom of her home and died, aged 31, before her parents Barbara and John could get through the door to reach her.

The couple are only just coming to terms with the loss of their bright and popular daughter, but they are now determined to raise funds to fight the disease that killed her.

Barbara, aged 62, of Outermarch Road, Radford, Coventry, explained how "horse-mad" Vanessa was riding with her daughter Bethany in 2001 when she hurt her ankle after dismounting.

Shortly afterwards, the former Cardinal Newman pupil began suffering agonising pain and, after many tests, was diagnosed with rare Reflex Sympathetic Dystrophy (RSD).

The disease causes severe and incurable pain in the nerve endings, and Vanessa was forced to have a leg amputated in an attempt to ease the pain.

But it continued and the formerly active and lively estate agent began having blackouts, and it was during one of these in April 2005 that she died.

Barbara said: "I've never seen anybody in so much pain, she once told me it was like having your leg in a hot fire all the time.

"I'm amazed at how brave she was to cope with it, and to keep being a mum and carry on driving and being independent, but it still broke my heart to see her suffer.
"She begged the doctors to take her leg so the pain would stop, but it didn't."

Barbara said Vanessa, who had two older brothers and a big sister, kept smiling through the pain. She also kept up her love of horses.

Barbara, who with husband John has taken on the role of caring Bethany, now 10, said: "Bethany's coping very well but we'll never replace her mum.

"We miss her every day and always will. She was the most beautiful girl."

John, aged 65, who works in leisure services for the city council, said he had not realised how well-loved his daughter was until her funeral when 700 mourners attended.

He hoped all those who supported Vanessa at her funeral would attend the first of two charity discos being held in her memory at the Jaguar Sports and Social Club, off Capmartin Road, on January 20.

He said: "We've already had so much support from her friends - people have offered to DJ, to decorate the hall, and we've had more than 50 raffle prizes donated."]

Thanks, Vanessa, for spotting something that looks like it might have been misinformation.

And thanks, Jo for the longer version. Although the writing style makes that article somewhat difficult to read, it does do a bit better than the news brief Vanessa found.

Mike

First, Bassman: check your private messages.

To me, this doesn't really sound like suicide, but it's definitely a possibility. Does anybody else think that this could have been a medication problem? I had seizures (or at least one big one, resulting in a nice trip to the ER) on Nortriptyline , and I'm sure I'm not the only one who has had weird reactions like that!

-Betsy

The way the article made it sound was that she died from RSD, as in like someone dying from cancer! That is why I pointed it out. I wasn't thinking suicide!


P.S. I mean the small clip, that I posted first!

"Misinformation" could have been people, not knowing what RSD is, thinking that she died of RSD!

I wonder with the leg amputation , was the RSD higher up also? or was it phantom limb RSD after that?
always with the questions- that's me...
no mention of medications.

Deleted because it is just my opinion.

Buckwheat/Roz is correct. RSD can (usually in severe cases) cause some serious complications, which can then lead to death. There is one documented case in which no other cause of death could be found other than RSD. However, in most cases of death in RSD patients, the treatments/medications or complications (like severe infections) are the culprit.

Every RSD patient should be careful to recognize infections, and be VERY careful of any cuts or sores in the effected area. Disrupted circulation (like we get in our effected areas) can make for severe, fast-spreading infections. Plus, because RSD often causes skin atrophy, severe wounds may be more likely to happen for almost no reason. Some people with RSD get severe sores and ulcers because of that.

Sorry for all of the scary info. I've had a few infections in my RSD leg. It was kind of scary, but I always got on antibiotics the same day, before the infection could spread too far up my leg!

-Betsy

my two cents worth...
 

I don't know about any of you... but as for amputation and me.... I have more than once, in all seriousness---BEGGED my doctors to please, please, please cut off my legs. Each time I have been told NO, unless I have a severe infection that will not go away, it's not going to happen.

It has been explained to me and I understand that the pain from RSD will not go away even if the limb is amputated.

It has also been explained to me by more than one doctor that "if" there is no cure for RSD found that I stand a great chance of dying from complications from RSD. Be that from it messing with my internal organs or from the years of build up of medicines I don't know.

I just keep searching for new medicine and any new research that may be going on.... i keep thinking---put me in coach, i'll be a guinea pig.

hugs to all,
abbie:hug:

Hi Abbie,

Good to see you posting here, I hope you're doing OK.

Mmm, I'm very surprised they amputated, as you say these days it's only done in the case of severe, unstoppable infection. But perhaps that was the case - though the article makes it sound as if she begged them so much the docs caved in. Not a good article (though very interesting) because it brings up more questions than it answers. I just hope it wasn't a case of more idiot doctors, though that's what it sounds like from the story.

How it reads to me is that she collapsed, having had several previous similar incidents, and died quickly. But....did she hit her head? Maybe it was a seizure. Could have been a blackout from heart complications from meds (hey, if they were clueless enough to amputate, what on earth were these docs giving her?). And what about an autopsy? Maybe the idiot docs just said oh, she had RSD? Well that's cause of death then. I know autopsies are hard on the family, but I can't help feeling it would have been a service to the RSD community to have ascertained "cause of death".

Very sad, but I kind of wish we knew more details...(news like this can't help but make us all wonder)...

...Anyway..all the best :hug:

If someone is up to it .. there are phone #'s on the article link that I posted- I just didn't want to post them online.

I was wondering these questions, too, Artist. I was wondering if she died from the blackout or when she blacked out she hit her head, or such.

Concerning to me, as I have been blacking (passing) out quite a bit, lately, but... I keep being told that it must "just be the pain". Really makes me wonder.:confused:

.....but if she had a seizure and passed out in the bath tub OR hit her head on the bath tub. I know I'm not allowed to have a bath or anything on my own because the pain has caused blackouts with me and also I have no muscles and if I slip under the water I can't get my head out of the water again.

Love Frogga xxxxxxxxx

blackouts from meds
 

Hi,
I was on methadone for a long time. I passed out once that I know of. I was lucky that it happened at work and my coworker called 911. But there are other times that I have done things and lost periods of time. I remember none of it. Only what my family told me. I no longer take methadone and never will again. Yes it helped great with the pain, and I could work as long as I took it. But it wasn't worth the danger it put me in. As for suicide, I think about it everyday, but I could never do that to my family. I love my grandchildren too much. They are the reason I try to keep going.

Sue

hey sue
i can empathise. it is always something that sits like a gremlin in the back of my mind - a way that will get rid of the pain and fear and stupid RSD generally.

But I'm just too damn curious about tomorrow - who knows? it could be a good day, a great day or a dreadful day.. but unless you see it you'll never know.

Also, though my brain may consider it - at heart, I will NEVER let the RSD beat me. It is a part of me but I am in CONTROL and it will NEVER be. There are some parts of us all that RSD can never touch, our hearts, our loves and our spirits. Pain may damage how we relate to them- but it can't take them away. I still love my animals - yet I hate them for their fur that burns right through me if I stroke them- but I will never stop loving them.

......and I guess, as I said earlier, I am just far too curious about the future to wish myself free of it, I just wish that I was RSD free in it!

Love

Frogga xxxxxxxxx