Urgent Plea From Forum Member - please do not skip (1 Viewer)

[russi]

longtime member's son needs your help

Hi, folks.
This is embarassing and humbling, but as a father, I must get past that.
One of my sones has an extremely severe case of Type II, Full-Body Reflex Sympathetic Dystrophy. - Aside from 24 /7 excrutiating pain that no pain meds really touch, he suffers with severe body jolts and spasms, difficulty swallowing, and so much more. He can no longer tolerate a razor to his face. He is bed to recliner (if he can tolerate sitting). At 21, he is rapidly deteriorating.
His specialist (one of the top in the world) has said that Matt truly needs a procedure done in Germany. (The FDA will not allow it in the US as it involves an induced coma of more than 2 days.)
A bank has set up a fund. And I can accept donations on the web.

Please visit www.SetMattFreeOfRSD.com And, please add a tag line to others in your email to visit there.

Matt truly needs folks like you.
And I know that someone out there can help me with a viral email campaign.

Humbly,
Russ

 

[russi]

Hi.
http://www.abc6.com/news/20562919.html
This is a TV segment on my son, Matt's desperate need to get a treatment in germany. He suffers from the worst type of RSD.
we need folks to forward this email or his website: www.SetMattFreeOfRSD.com
to your address books, social networks, and...
Please. As a father, I am helpless financially now except to reach out. This is humiliating, but my son desperately needs this.

Some of what he deals with from his website that our family did for him:
** The pain in my feet, hands, forearms, spine, and head is relentless and excruciating. ** I endure extremely sharp, fast jolts which race up from the base of my spine to my neck, frequently. They also take my breath away.
** There are severe episodes of what feels like a wild ball of sharp, shooting, jolts of pain.
** I experience pins and needles episodes from the waist up. The ones in my face, neck, and head are extremely intense and almost unbearable. These are brought on every time that I eat or drink.
** There are severe, throbbing headaches, daily, which require me to take medication and return to bed. Yet, the medication only occasionally takes off 'the edge' of the headache pain.
** My memory is poor and I struggle to concentrate and focus.
** When I am at rest, the pain is at a level #8; my full-body RSD pain has increased, as well.
** The pain is intolerable when standing, and my right foot buckles out from me in a very short time.
** I remain in a wheelchair, recliner, and bed, most of the day.
** I have difficulty swallowing all of the time. It impacts my eating. I choke on many foods and some large medications.
** I experience episodes of a loss of my voice, multiple times per day.
** Through much of the day, I experience 'zig-zgs' and 'flashes' before my eyes.
** My hands become excruciatingly painful when I need to write, shave, or try to lift any ‘non-heavy’ items such as books. The vibrations of an electric shaver have become too much for me to tolerate.
** My joints have become even more stiff and painful, than ever.
** Full body sweats are very uncomfortable and embarrassing.
** Shortness of breath episodes, simply add to what I endure, daily.
** My hands and feet are unable to tolerate the cold, and they turn a purple color for 'no reason at all'.
** Loud noises cause great pain to my ears.
** Sleep is terrible, sporadic, brief, and non-refreshing. Even when I take sleeping medications, it takes 3-4 hours to fall asleep due to the pain, other symptoms, and primarily ‘feeling awake’. When I do sleep, it is often in brief naps, and I find it difficult to return to sleep.
** There is a great pressure in my lower spine, which makes sitting extremely painful, for extended periods.
** With any new pain to my body, the RSD-type pain goes to that site.

I thank you for anything that you can do. If you have questions, please let me know.
Tim Janis, the composer is also helping us out. Even though we have only spoken by phone and email.

Humbly,
Russ

 

[ColinEssex]

And the treatment is?

Col

 

[Babbage]

Thats awful

Noticed in the article it says `since a routine surgery 5 years ago went horribly wrong` - surly thats a case for compensation etc.?

Any football stadiums or the like near by? A family friend has a little girl with a medical condition that they are fundraising to try and help cure - collecting at large events like that provided a great fundraising avenue. I belive they used to corner people around the entrance/exit points. Or maybe get the place itself involved `everyone here today try and donate a dollar towards xyz - people are collecting on your way out` announcment type stuff! They also have collecting jars in all their local shops. Many religious places near by you can canvas?

m.

 

[rsmonkey]

how much does the treatment cost?

 

[dsigner1]

Done a quick look up to find out what RSD is etc. This suggests that treatment is limited to controlling pain so presumably the Germans have something which goes beyond this?
I am not medical but have a background in alternative health. How about trying B vitamins. B6 seems to favourably affect this sort of thing. You usually need to take the B vitamins together so the actual dosage is quite complex. Point is that done properly it is a cheap chance to nothing. Find some one local who knows about these things. Otherwise contact Nature's own who offer a free consultation with a doctor over the phone. Hope this may be of some help

 

[oumahexi]

And we grumble when we have a paper cut. I'm going to add a link to this story onto my website, with some luck some healers in the US may pick up on it.

 

[russi]

Hi, folks. Thank you for your comments and questions. i will try to address them in no special order.

We went to top lawyers in medical malpractice and were told it was simply an 'ugly complication'. Apparently RSD cases virtually never go anywhere.

As for vitamins, et cetera, we did try these. Matt has tried all recommended options available in the U.S. - From meds and pain meds, and infusions, and nerve blocks, and stimulators, and more.

Unfortunately Matt's type and level of RSD is so far beyond those.

The treatment is a 5+ day coma where high doses of ketamine are delivered. He must be monitored extremely closely. - In lay terms, the process 'reboots' his brain and sympathetic nervouse system, ... Almost like a computer re-boot. - The outcomes have been incredible! We have personally spoken with patients and parents, alike.

Matt stays in germany for 4-6 weeks. Then there are approx. 6 months of ketamine boosters that can be doen here in the U.S.

Matt's doctor is one of the top in the world and only sees the worst cases.

Embarassingly, I have re-fianced multiple times and cannot any more. Same with credit cards.

The cost for Germany is approx. $75,000 including airfare and cost of my wife also being with him for the 4-6 weeks. (I will be here working and trying raise more dollars.) Then the follow-up is estimated at 425,000. And, we have approx. $25,000+ in medical bills we need to clear up for past treatmenst . (My insurance with pays very littel. Ex. a recent bill, they paid $124 or so of an approx. $6,000+ bill.)

I do need all of you to pass along this website TV segment on Matt and his own website to as many folks as you can. -- Please. If you are a ftahre or even if not, I hope that you would have compassion for Matt.

[http://www.abc6.com/news/20562919.html/B]
www.SetMattFreeOfRSD.com

Humbly, Russ

 

[russi]

Hi.
We have a friend who is involved with Reiki but it did not help.
Matt truly needs this procedure (and prayers).

Russ

 

[rsmonkey]

What so you're looking at $500,000 for all the treatments with an extra $25k of medical bills you already owe?

 

[oumahexi]

Hi.
We have a friend who is involved with Reiki but it did not help.
Matt truly needs this procedure (and prayers).

Russ

I'm sorry to hear that Russ, I would ask your friend to continue though, there is no need for them to be in the same room, Reiki works in much the same way as traditional prayer, and right at the moment, Matt needs every little bit of help he can get. Ask your friend to send Reiki to the situation, not to the symptoms, this can often have far greater results than hands on Reiki.

In the mean time, I have placed a link on my website to steer people to your sons website, the more people are aware the more likelyhood of donations coming in. (www.reikitrainingscotland.co.uk)

I am going to pledge any income from my therapy business, taken on a Wednesday (the day I am least likely to have other commitments) from now until the end of the year. It may not be a lot, but I do hope this will help. At the very least, it may help raise the profile of this terrible condition.

By the way, I've also added a notice to our intranet notice board at work, in an effort to get others to offer a similar donation.

 

[Vassago]

The Ketamine treatment is what they did on the show House right? It sounds interesting that the treatment is real. I hope it works out for you. I truly wish I could donate, but I have pretty much nothing after my divorce.

 

[russi]

Hi. Thanks to all of you who responded.

1st, I apparently did not proof read my previous response.
The Germany leg is $75,000. The follow-up is approx. $25,000 and past bilss estimated approx. $30,000. - So perhaps, $130,000 in total.

I did not see the House episode but if you Google CNN or Good Morning America for 'Ketamine Coma RSD' you shoul dsee those and perhaps other articles.

Thank you so much for the offer of donations from your practice and for the link and intranet work.

We do need whatever help that we can get. So even if you have no money, I ask if you would say prayers and pass along his website to those in your address book, on forums, or ... ?

www.SetMattFreeOfRSD.com -- http://www.abc6.com/news/20562919.html -- http://www.setmattfreeofrsd.com/Breeze_Article.htm

Thank you all.

Humbly,
Russ

 

[ColinEssex]

I had a sneaky feeling costs and donations would come into play.

Wish I had £1 for everytime I get a pleading email.

Col

 

[BarryMK]

Sorry Col old mate but I think that was uncalled for. If it was coming from a 1 post first timer, I'd agree but russi is a long established poster here and there is what on first glance appears to be a great deal of substantiating evidence that this is a genuine appeal. If it is genuine (and I have no reason to doubt it) it's unworthy to kick someone when they're down.

 

[oumahexi]

I had a sneaky feeling costs and donations would come into play.

Wish I had £1 for everytime I get a pleading email.

Col

Oh Colin. If you read the messages that Russ has posted, can you honestly say he's anything but genuine.

I understand what you are saying, I truly do, because we do get innundated with these kinds of pleas on a daily basis and many of them are simple money making rackets, but I find it very difficult to believe that Russ deserves to be put in that category.

I am sorry you have had such bad experiences in your life as to cause you to be so cynical and hope that things get better for you in the future.

 

[ColinEssex]

Ok - benefit of the doubt. Russ is not a first time poster.

Col

 

[russi]

1st, thanks to those who understand.

Colin, I was raised to believe that a father did everything himself without outside help. Which is why despite my own health issues, I have pushe don. I have re-financed my home multiple times. Credit cards are maxed out. And I drive a 10 year old Chevy Prizm. - Asking for help doe snot come easy. But my son's life is at stake.
The Sovereign bank was the one suggesting we let them establish a Medical Fund.
How anyone could imagine Matt' story to be anything but true. - I am watching my son fade before my eyes. he isn't even wanting to get out of bed. Or eat. - I watch the spasms. I see the pain on his face.
Doctors use something called the McGill Pain Index. - And certainly not to make light of other conditions, cancer pain is in the low 30's. Matt's is in the low 40's. 24/ 7 - No pain meds that help cancer patients help him.
The RSD has spread so much.

I hope Colin that you or a loved one never faces this severe form of RSD.

And, yes, we have been vetted by the media. If you go to the website, www.SetMattFreeOfRSD.com you will see 2 TV stations' segments plus multiple newspaper articles.

And, we do need so much more funds.
If you Google CNN or Good Morning America for Ketameine Coma RSD you will find segments on this.

I am sorry to have troubled folks. Having been a member for years and feeling a sense of community, i thought that I could reach out. And some of you have been kind.

Russ

 

[georgedwilkinson]

Russ,

More people understand and support you than is apparent from some people's dissent. I personally went back and looked at your past posts to make sure you were on the level. And the fact that you even bother to post back lends credence to your cause. I hope you'll understand that the dissenters here don't speak for the rest of us.

I can't even imagine the pain you and your family must be going through.

I pray that your son will be healed and that your finances will work out.

 

[Rich]

Hi, folks. Thank you for your comments and questions. i will try to address them in no special order.

We went to top lawyers in medical malpractice and were told it was simply an 'ugly complication'. Apparently RSD cases virtually never go anywhere.

Humbly, Russ

I ask out of curiosity, were you not warned of the possible complications before the operation?