MS Patient Registry
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
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
Anyway, like I said, just curious
Cheers
Niko
The reason that I ask is that I just got the latest issue of the MSQR newsletter. So it just got me to thinking
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
Anyway, like I said, just curious
Cheers
Niko
"Avoid making irrevocable decisions when tired or hungry." -- Robert Heinlein
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.
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!!!!
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.
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!!!!
Gues equals Bonnie!
Oops, forgot to sign in, so the above comment is mine, Bonnie.
I just realized you can't edit your posts on this board? I must have that wrong, can anyone help me with this question?
I just realized you can't edit your posts on this board? I must have that wrong, can anyone help me with this question?
Bonnie
Glad I was curious
Bonnie, you're right about the newsletter being worth it's weight in gold. Very useful info
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!
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
Cheers,
Niko
Bonnie, you're right about the newsletter being worth it's weight in gold. Very useful info
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!
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
Cheers,
Niko
"Avoid making irrevocable decisions when tired or hungry." -- Robert Heinlein
- fightingms
- Family Member
- Posts: 80
- Joined: Fri Jan 09, 2004 3:00 pm
- Location: Western PA
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
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