This Is MS Multiple Sclerosis Community: Knowledge & Support

Due to my personal situation (co-founder of the Boston Cure Project for Multiple Sclerosis bostoncure.org), I am regularly approached by "defectors" from the ranks of the NMSS. So I get a very one-sided view of their organization and I thought that people on this forum could present the other side to balance out my view.

I'm looking to have people post their success stories from interacting with the NMSS.

Art, you may want to get in touch with WillySnout... he has resigned from this forum, but I believe he still posts at MGH. In any case, he had a very positive experience with the NMSS, particularly when he was first diagnosed.

Art,

Well, although I haven't had the need to ask for any specific services from the NMSS, I will say that they have continued to stay in contact with me, and have continued to provide encouragement to me to keep doing my research. They have been consistently supportive and positive about everything I have found so far. Not once have they debunked anything I have provided them. (Not all of which have I continued to post here.)

They have also expressed their gratitude to me whenever I provide them with information regarding how we MSers "feel" out here (i.e. problems with neuros, feeling like we aren't heard sometimes, etc.)

With me being just one "little guy" out of thousands of MSers, I think that says something. For them to take the time to maintain contact and keep encouraging me is nothing to be taken lightly.

So, I'd say that's a positive in their favor.

Deb

Art,

Just a quick thought on the topic of NMSS. For my point of view, it's hard to speak about the entire Society. It is designed to work in more of a local/chapter way rather than National. The money raised by the MS Walk is used within the chapter itself.

Of course I get mailings and such from National but anything I want or need is given on the local level.

That is both a strength and a weakness. Some chapters are more vibrant that others. That could be due to geography, interest, number of MSers in area, talent of staff... etc.

The one thing that sticks out in my mind, about NMSS in general, is the question of why does National rely so heavily on the chapters? I think that in doing that, it weakens the National ability to get MS information out to the general public on a regular, louder basis.

Just some thoughts.

Niko

_________________
"Avoid making irrevocable decisions when tired or hungry." -- Robert Heinlein

I understand how the NMSS works, I'm just looking for individuals tales of benefit from interacting with them. Which of these local programs have been of use to people (I'm looking for first hand accounts), how did they help, etc.?

I just feel I'm getting overly biased in one direction, and would like to balance it out with some of the good stories. I know they are out there!

I'd like to stress that I understand what their marketing says they do, where they say they spend their money, what their mission is, etc. I really want to hear specific, first hand examples of the execution of those things. Odd Duck's post is a great example of what I'm interested in.

Art,


I would interested in knowing if there is a main "theme" of discontent that you are experiencing from the "defectors" of the NMSS.

I have spoken to an ex 9 year volunteer of a local chapter of the NMSS and also know about a first hand, inside experience that a close friend of mine had with the head office of the NMSS. (Reingold and associates)
I'm curious to compare what I have been told versus what the "defectors" have been relating to you.

If you prefer to contact me privately on this matter rather than cloud the main intent of this thread, please do so at hzanin@sympatico.ca

Thanks.

Harry

Hi Harry,

I really don't want an NMSS bashing tangent to start, so I'll contact you directly to answer your question. Thanks for providing that option!

what a pleasant place this board has become thanks for the spot-on etiquette, Harry.

Arron,



I think most readers who know of my participation on other MS forums will find that I communicate in this manner.....most of the time There have been occasions (of which you are quite familiar) when I have "strayed" away from the proper course

Harry

Hi Art

Well, they are 3,000 miles away from me, but the web sites of the Multiple Sclerosis Association of King County, http://www.msa-sea.org and the Oregon MS Society, http://www.orcnmss.org have both helped me personally. They may be "examples" of what a difference local chapters can make.

I've used the Seattle chapter "questionnaires", to chart my symptoms, and in so doing got a much better understanding of where my lesions were probably the "worst". I'm also using them to "chart" my MS progress, or, hopefully lack thereof. What the chapter does locally is also evident on their web site and pretty impressive. You can check out the Ariel House link, which is housing for people with MS.

The Oregon site I've only been to once, but what a great newsletter they had (December/January 2004): Oregon MS Research: On the Cutting Edge It gave me easy to read information about the TCR peptide trials, I learned Vandenbark and Offner (working on estrogen) are working together (and married by the way ), and I learned OHSU was recruiting for MS research trials for TCR therapy, a pilot study of mega-3 fatty acids, and a trial on the cognitive effects of ginko biloba on thinking.

Their research mirrors some of my personal biases about MS at this point in time (less than a year into it), so I "learned" if you will, where the research I personally wanted to follow was happening. That particular newsletter also "mourned" the loss of one of their advocates, who also served as chair of the Oregon Disabilities Commission. Not bad to have a person with MS chairing that kind of commission in a state.

Now, back to where I actually live, I will just say that I learned about the MS support groups in my area from a This is MS member. I am a member of NMSS.

And, since the US has definite north, south, east, and west "cultures", I'll put on my Southern culture hat and say thanks for Boston Cure.

Sharon

What I don't understand is everytime I tried to sign up on the NMSS site they want $25. I visit their site, but I have yet to join. Why do they charge a fee to the very people they are supposed to be helping who just want information?

I have had dealings with the MSAA. A wonderful organizations with all sorts of programs to help MSers in their everyday lives. They provide free cooling devices thru their cooling program. Free assistive devices, a lending library, MRI help for the uninsured, etc.

Hi Art...

I am still undiagnosed and have a very hard time finding the light at the end of this LimboLand tunnel. It's been a very frustrating time. Recently, my local chapter of the NMSS helped me out immensely...

The first neurologist that I was seen by, ruled out any possibility of MS. At this time, I didn't request any copies of my MRI report. This was about 1.5 years ago. The sx's have been progressing and I've recently been referred to a new neurologist. I decided to get copies of all of my medical records, for my review and for the new neuro. I found that the neurologist did not tell me everything that was on the MRI report. Looking for answers, I posted my MRI results on the WebMD forum and was strongly encouraged to be seen by an MS specialist. They recommended I contact my local NMSS group.

By accessing the NMSS "find your chapter" option, I quickly found the email address to the local Idaho group. I asked if they recommended the new neurologist I had been referred to. Within hours, my email was answered. They included a personal recommendation of the neurologist, told me what they knew of her background, and sent a list of all neurologists they would recommend. The rep who replied also added me to their "Information Resource Center" list so I could receive information on diagnosis.

In a time of such frustration this was really helpful to me. Just by offering this service, I am able to go to a neurologist who I already feel I can trust...the two neurologist's who have examined me were not on the list! I only wish I would have used this service earlier...

Hope this helps!
~Dana