MS Patient Registry

Niko · Posted: Mon Feb 16, 2004 3:56 pm Post subject: MS Patient Registry

How many here are members of the Registry? I've read that there are more than 20,000 enrolled. That's pretty impressive. I joined shortly after being diagnosed in 2000.

The reason that I ask is that I just got the latest issue of the MSQR newsletter. So it just got me to thinking Smile

For those who are not familiar with the registry, here's a link to the CMSC-NARCOMS info (Consortium of Multiple Sclerosis Centers)-(North American Research Committee on Multiple Sclerosis)

http://www.mscare.org/patient.cfm?doc_id=64

The newsletter is a quarterly. I find it to be very informative with information on various studies and trials. Being a member of the registry, I get the newsletter for free. I occasionally get questionnaires to answer. That's all Smile

Anyway, like I said, just curious Smile

Cheers

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

crispy · Posted: Mon Feb 16, 2004 4:09 pm Post subject:

Hi Niko,

I must admit that I'm not a member of the registry, I hadn't heard of it until your message was posted. There seems to be plenty on the site to read, so I'll give it a go. Smile

Thanks for raising the point.

All the best,
Chris P

hotpepper · Newbie Joined: Jan 31, 2004 Posts: 7 Location: Louisiana

Thanks for the info. Never heard of the registry but I'll give it a try.I like to read everything I can about MS and try to keep up with the latest news. Thanks again! Linda

Guest · Posted: Tue Feb 17, 2004 11:41 am Post subject:

I'm registered too, Niko.

I love comparing my status every six months. Sometimes I am pleasantly surprised by how "stable" I am, although I find it very difficult to remember to answer the questions about how I'm doing the last month or so, and not the last six months. Embarassed

The Quarterly is worth it's weight in gold in my opionion as well. You can take it on line or have it mailed to you, which is very good for those with privacy issues. Did you notice how much it would cost to receive the quarterly, if you had to pay for the subscription, as opposed to receiving it free because you fill out the survey? EEK!!!!

Bonnie · Family Member Joined: Dec 18, 2003 Posts: 41

Oops, forgot to sign in, so the above comment is mine, Bonnie. Embarassed

I just realized you can't edit your posts on this board? I must have that wrong, can anyone help me with this question? Crying or Very sad

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Bonnie

Arron · Posted: Tue Feb 17, 2004 12:29 pm Post subject:

Hi Bonnie,

You should be able to edit your posts... there *should be* a button in the upper right corner of your posts (next to the "quote" button) that says "edit" on it. If there is not, please let us know and we'll make sure there is. Smile

Niko · Posted: Tue Feb 17, 2004 12:50 pm Post subject:

Glad I was curious Very Happy

Bonnie, you're right about the newsletter being worth it's weight in gold. Very useful info Smile

In the Spring issue, there's a news item from the BBC, there was a British Medical Journal study on stress.
http://news.bbc.co.uk/1/hi/health/3118758.stm

A stress link to MS? Oh yes, I do believe so! Wink

When I first developed symptoms, I was under tremendous stress from work. It was absolutely awful. I resigned before I got the official diagnosis. I felt much better after leaving the job.

I think the stress opened a door for the MS to show itself.

Stress. It's a bad thing Exclamation

Cheers,

Niko Cool

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

fightingms · Posted: Fri Feb 20, 2004 7:51 am Post subject:

I LOVE my Narcoms quarterly magazine. I love the up to date info on the latest clinical trials.

I have to update my info for the registry....just got an e-mail about that.

Take care all........Kim

Shayk · Family Elder Joined: Feb 07, 2004 Posts: 589

Greetings all and thanks Niko for the info on the registry. I didn't know about it and have contacted them to send me the info and I'll certainly sign up.

Smile

Sharon

seelie · Posted: Thu Jul 15, 2004 3:17 pm Post subject:

Yes, I'm also a big fan of the Quarterly Update... it does seem to have most of the latest info and some things I haven't heard of yet.

The survey doesn't take too long, but sometimes I think they are asking things that I have already answered like when were you diaganosed ( I don't remember anyway -- I just remember the MRI) ... since you keep the same username I don't see why they keep doing that.... but I'll put up with it to keep getting the quarterly update...

=G