My 21 year old son
 

Hi, I'm terrified. My son just turned 21 two weeks ago and two days later was diagnosed with RSD. He gets his first ablation treatment
in the morning. He got a cane yesterday and it breaks my heart. I am terribly depressed...he was not supposed to get old before me. He has two beautiful little girls and sometimes has a real difficult time picking them up. My heart is broken for him, his girls and his wife.

dear melody~
 

if you are referring to Reflex Sympathetic Dystrophy -
I am sorry to hear this, yet you are not alone - here is the link to that forum....

http://neurotalk.psychcentral.com/forum21.html

http://dl9.glitter-graphics.net/pub/...zueoabd5su.jpg

Hi Melody and Welcome to NeuroTalk. I know how worried you are as a Mom; I have a son w/many health issues, but it doesn't matter how old your kid's get, we still worry about them.

Glad you are here and like CTena said.. Check out our RSD forum. There are many other forums here w/so much info.

Take care and let us know if you need anything.

Thank you
 

I'm not sure if I am doing this right but I wanted to say thank you so much. I will be checking out that forum shortly.

thank you
 

Hi, thank you so much for your responce. I've been feeling so alone and depressed...so this has really helped.
Melody

Hi Melody and Welcome to Neurotalk!!

I see that you've found your way to the RSD forum. You will find a WONDERFUL, Caring, and supportive group of people at the forum and everywhere here at Neurotalk!!!

I understand your fears for your son.

I too have RSD. Please know that everyone of us with RSD is different. No two cases are the same nor do we respond the same medicines or treatments.

My suggestion... and only a suggestion is to find a pain management specialist who has a strong knowledge of RSD.

I have heard that if caught early RSD can be put into remission with various treatments including nerve blocks.

The RSD forum is a wealth of information. If you have any questions please don't hesitate to ask... someone will be along shortly to help you out the best that we can.

:hug:
Abbie

Thank you Abbie,

It feels good to not feel so alone...but sad at the same time...I don't want anyone to go through this. Is there any way you know of to raise awareness about this issue? How do you find a pain doctor that understands RSD and isn't just "experimenting"? I am so afraid that that is what they are doing with my son, but I don't really know. It seems like no one understands RSD, or they would have diagnosed him a year and a half ago. My son really likes his doctor...so I'm just not sure what to think...I just know I'm beside myself with fear.
Thank You very much.
Melody

Here are a couple of really good sites that offer a great deal of information including ways to raise awareness about RSD.

American RSDHope
http://www.rsdhope.org/

Reflex Sympathetic Dystrophy Syndrome Association
http://www.rsds.org/index2.html


I understand your frustration and fears. Unfortunately many doctors have never heard of RSD so many people are misdiagnosed or can go a long time before they do get diagnosed.


My doctor knew very little about RSD before me. I guess I was lucky... his nurse practioner had just come back from a seminar where RSD had been highlighted. The nurse practioner recognized the symptoms and called the doctor in to the room. My doctor sent me to a couple of other doctors for a second opinion. All concurred with RSD diagnosis. Then my doctor called around to pain management doctors until he found one who had knowledge of RSD and had treated others with RSD.


What kind of treatments or medicines has your son received?

My son has been on numerous medications. The latest are OxyContin and Wellbutrin for depression, among several others. He is also ADHD and is on meds for that. He has a system that defies meds on a regular basis and this makes it even harder to ease his pain. His body is resistant to many meds and this is very hard on him, and his family. He has had a ganglion block
(2/5/08) which, from what I understand is diagnostic not therapeutic. If you have anything encouraging to tell me, please do. I understand that suicide is high among people with this condition. I have a sister who did that and I am not sure how to deal with this fear.
Thank you
Melody

Melody...

I know you are scared. Please know you are NOT alone. Your son is NOT alone.

Please know that ganglion blocks are not only diagnostic but theraputic also... many people get great relief from these blocks.


Please join us in the conversations over on the RSD forum
http://neurotalk.psychcentral.com/forum21.html

You will find some of the STRONGEST, Loving, Caring, and supportive people there!! We fight this monster called RSD together.... We know we can go to the forum to ask questions, yell, vent, scream, cry. No one judges. If you need a shoulder to lean on or just a hug... you will find it there.

You will see posts about research, clinical trials, medicines, etc there. If someone finds something that they think may help fight this RSD monster... they post it there.

I know it's a lot to absorb... It was for me too. I have printed out posts of things that have worked for others and taken them to my doctor... asked him can we try this or why haven't we tried that... I found it opens the door with the doctor... maybe he didn't know about these medicines or treatments.

Maybe your son could check out the forum also... I found it does help so much to know that your not alone in this battle.


:hug:
Abbie

Hi Abbie,
I will check out that site. Thanks for the info.
When my son had his ganglion block, it didn't help for the first day or so, then he felt great...for a day...then it got worse. It was so sad because he came to me and said "Look mom, my hand's warm." He was (we were) excited, and now it is worse, he used to have it mainly on the right side of his body, now it is making his left leg hurt terribly, and also the left arm.
He has high hopes about the procedure in the morning, we all do. I hope it works out well.
Can you tell me what state you are in? (If you are in the States that is)
Thanks again Abbie
Melody

Hey,
Welcome to Neurotalk, my name is Alison, I am 13 years old and I suffer from RSD in my left leg and right arm. If I can help you in any way please ask. I know how hard coping with this diagnosis is. As Abbie said just remember that you are not alone.
Thanks and take care
Alison

Hi, Melody! :Wave-Hello: Welcome to NeuroTalk!

I see that Abbie has given you some great starting points, so I'll just add that you are welcome to join in anywhere. :)

Hi there.
Guess what?? My name is Melody also!!! So now there are 2 Melody's at Neurotalk.

You are going through a horrible time right now. I have a son also with a lot of medical issues (and mental stuff going on too). Sometimes it breaks our hearts to be parents.

I can only take you in my heart and give you my prayers. Parents walk a fine line. We would give up our souls for our children. Sometimes we have to.

Just keep checking back here and get all the support you can get.

I'm thinking of you, please know that.

Hi Alison,
Thanks alot for your message. It is really nice to know that people care. I hope you are having a good day.
Melody

Hi Cindy,
Thank you for your note. I'm going to go see if I can get a nap...got to work tonight.
Thank you,
Melody

Now that's a lovely name...
Thank you for your comforting words and prayers...that means alot. I'm feeling a little sick to my stomach and anxious to see my son. He says he has edema on the right side of his face, it's red also. He and his wife have a long drive (2.5 hr) and she has the flu.
Please pray for them also.

Melody

From one Melody to another!!

He's in my prayers.