emails

[Guest guest]

I have recently signed up and am getting loads of emails that I don't know what they are about. Please can you tell me in simple language, as I have only just got my lap top, how to stop getting these.

Thank you

Pat

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hi all,

Below is a response from our local chapter, to whom I wrote when I read the "results" from the NMSS.

Our local rep is a pretty good sort, and if she does hear anything at her level, she will inform me and

I'll pass along any news she relays, whether it be good or not. I sent her three e-mails with different

articles etc., and really tried to be polite, (sigh) but at least she responded which is more than some of

the institutions I've sent off e-mails and inquiries to. Keep the faith, they are "hearing" us. Sorry about

the length, I did edit a lot out but left some for effect.

Take care everyone and have a Great Day.

Jim(ms)

----- Original Message ----- From: Kris

'jsgarvin'

Sent: Monday, May 17, 2004 9:29 AM

Subject: Emails

Hi Jim,

Thanks for all of the info. I don't always hear things like that for quite some time. You know, everything has to go down the information pipepline of the organization so it takes forever.

I can appreciate your frustration with the current pace of research and the lack of really good medications for the disease progression. I know that's what we all want. I truly think that the Society strives to be fund the best research and put out information they feel is reliable. The tricky part is when findings are reported by a smaller and unknown studies. I think they tend to wait until more is known before they share it with our staff and clients. It's really meant to be a safety guard against bad information, which does sometimes occur. As you know, a huge organization is dictated sometimes by panels of people, lawyers and rules. It can be greatly limiting sometimes. I know that everyone at the NMSS only wants to find the cause so we can find the cure, but it's also our responsibility to be cautious and conscientious in how we gather information and distribute it.

And as far as your switch in therapies, I definitely think you should pursue whatever course that you feel is benefitting you. Many people choose not to take the ABCR drugs and it is there choice to make. No one should decide for you, it's your health. I'm personally pleased to hear that you are doing so much better. It would be great to see the Society take on more research with this type of therapy to see how others are doing. I will keep my eyes open though and if I do see anything about work being done or findings reported about your new therapy, I will definitely let you know.

Take care!

e M.

National Multiple Sclerosis Society

Northern California Chapter - Central Valley Office

"The National Multiple Sclerosis Society is proud to be a source of information about MS. Our comments are based upon professional advice, published experience and expert opinion, but do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician. "

-----Original Message-----From: jsgarvin [mailto:jsgarvin@...] Sent: Saturday, May 15, 2004 3:54 PMUndisclosed-Recipient:;Subject:

Hi again,

This is another reason I believe that a good long second look at MS needs to be taken.

If the current research is wrong, fine, not to worry, no big deal. Change course, and strart

again. No one is "Blaming" anyone. If the research is flawed, ok, change it. I know they are

doing their best (doctors and researchers) but what if.....just what if they might, just might be

going in the wrong direction. Maybe, I'm the only one who will write to you about this, and

maybe not. Until a Cure is to be had, I'm hedging my bets on diet, exercise, vitamins &

supplements, and LDN. Copaxone is thought to be ok with ldn, but definitely not the others.

Again,

Best regards,

Jim

----- Original Message -----

From:

Sent: Monday, March 15, 2004 5:21 AM

Subject: [low dose naltrexone] Fw: NEW LOOK IN ORIGINS OF MS FINDS TISSUE AROUND NERVE'S ISN'T FIRST.............

----- Original Message ----- From:

To:Sent: Monday, March 15, 2004 8:08 AM

Subject: NEW LOOK IN ORIGINS OF MS FINDS TISSUE AROUND NERVE'S ISN'T FIRST.............

Study Offers New Look Into Origins of MS Finds tissue around nerves isn't first to be destroyed

By GardnerHealthDay Reporter

MONDAY, Feb. 23 (HealthDayNews) -- A rare look at the brain lesions characteristic of multiple sclerosis may provide new insight into the biological origins of the disease.

[Guest guest]

Just a quick note from Canada - I got a response immediatedly from the Canadian MS Society, which was very incouraging. Now we will se about the follow through.

Tom from Edmonton

----- Original Message -----

From: jsgarvin

low dose naltrexone

Sent: Monday, May 17, 2004 12:15 PM

Subject: [low dose naltrexone] Fw: Emails

Hi all,

Below is a response from our local chapter, to whom I wrote when I read the "results" from the NMSS.

Our local rep is a pretty good sort, and if she does hear anything at her level, she will inform me and

I'll pass along any news she relays, whether it be good or not. I sent her three e-mails with different

articles etc., and really tried to be polite, (sigh) but at least she responded which is more than some of

the institutions I've sent off e-mails and inquiries to. Keep the faith, they are "hearing" us. Sorry about

the length, I did edit a lot out but left some for effect.

Take care everyone and have a Great Day.

Jim(ms)

----- Original Message ----- From: Kris

'jsgarvin'

Sent: Monday, May 17, 2004 9:29 AM

Subject: Emails

Hi Jim,

Thanks for all of the info. I don't always hear things like that for quite some time. You know, everything has to go down the information pipepline of the organization so it takes forever.

I can appreciate your frustration with the current pace of research and the lack of really good medications for the disease progression. I know that's what we all want. I truly think that the Society strives to be fund the best research and put out information they feel is reliable. The tricky part is when findings are reported by a smaller and unknown studies. I think they tend to wait until more is known before they share it with our staff and clients. It's really meant to be a safety guard against bad information, which does sometimes occur. As you know, a huge organization is dictated sometimes by panels of people, lawyers and rules. It can be greatly limiting sometimes. I know that everyone at the NMSS only wants to find the cause so we can find the cure, but it's also our responsibility to be cautious and conscientious in how we gather information and distribute it.

And as far as your switch in therapies, I definitely think you should pursue whatever course that you feel is benefitting you. Many people choose not to take the ABCR drugs and it is there choice to make. No one should decide for you, it's your health. I'm personally pleased to hear that you are doing so much better. It would be great to see the Society take on more research with this type of therapy to see how others are doing. I will keep my eyes open though and if I do see anything about work being done or findings reported about your new therapy, I will definitely let you know.

Take care!

e M.

National Multiple Sclerosis Society

Northern California Chapter - Central Valley Office

"The National Multiple Sclerosis Society is proud to be a source of information about MS. Our comments are based upon professional advice, published experience and expert opinion, but do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician. "

-----Original Message-----From: jsgarvin [mailto:jsgarvin@...] Sent: Saturday, May 15, 2004 3:54 PMUndisclosed-Recipient:;Subject:

Hi again,

This is another reason I believe that a good long second look at MS needs to be taken.

If the current research is wrong, fine, not to worry, no big deal. Change course, and strart

again. No one is "Blaming" anyone. If the research is flawed, ok, change it. I know they are

doing their best (doctors and researchers) but what if.....just what if they might, just might be

going in the wrong direction. Maybe, I'm the only one who will write to you about this, and

maybe not. Until a Cure is to be had, I'm hedging my bets on diet, exercise, vitamins &

supplements, and LDN. Copaxone is thought to be ok with ldn, but definitely not the others.

Again,

Best regards,

Jim

----- Original Message -----

From:

Sent: Monday, March 15, 2004 5:21 AM

Subject: [low dose naltrexone] Fw: NEW LOOK IN ORIGINS OF MS FINDS TISSUE AROUND NERVE'S ISN'T FIRST.............

----- Original Message ----- From:

To:Sent: Monday, March 15, 2004 8:08 AM

Subject: NEW LOOK IN ORIGINS OF MS FINDS TISSUE AROUND NERVE'S ISN'T FIRST.............

Study Offers New Look Into Origins of MS Finds tissue around nerves isn't first to be destroyed

By GardnerHealthDay Reporter

MONDAY, Feb. 23 (HealthDayNews) -- A rare look at the brain lesions characteristic of multiple sclerosis may provide new insight into the biological origins of the disease.

[Guest guest]

Thanks for the reply Tom, I really think they've made a serious "blunder" and hopefully will

"see the light" and at least look at what it is we're all raving about. I really believe that we

ALL need to contact our locals, be polite but be firm, and put our two cents worth in.

I checked this group out last year when I came across the remedyfind website that led me

first to the ldninfo site then here. I stayed in the shadows (lurking) before I finally sent an

e-mail to one of the "old-timers" and got their spin on this ldn "thing" and found out that

they were on the up and up. E-mailed the group with questions, made the decision to try it

come heck or high water, and haven't looked back since.

If it hadn't been for the people here, the support and information they were willing to give,

advice from the layman side to the professional side, and encouragement from people I had

yet to meet (online), I don't think I would have given this drug a test-drive. Once I experienced

the remarkable effects, I was hooked. My worst day on ldn (yes still get them) is by far, better

than my Best day on Betaseron. That's just my personal opinion.

So, to ALL, Old-timers here and newbies alike, Thank you, I really enjoy all the posts and the

encouragement you've given to me in the past and what everyone is continuing to do for others

here and now. Thanks all, now I'll go back and hide in the shadows once more <grin>

Jim (ms)

----- Original Message -----

From: Tom

low dose naltrexone

Sent: Monday, May 17, 2004 6:04 PM

Subject: Re: [low dose naltrexone] Fw: Emails

Just a quick note from Canada - I got a response immediatedly from the Canadian MS Society, which was very incouraging. Now we will se about the follow through.

Tom from Edmonton