The Best Online Resources for MS

Replies to This Discussion

Permalink Reply by amanda on March 12, 2010 at 2:10pm

I will go first!

National Multiple Sclerosis Society
A great blog carnival: Carnival of MS Bloggers
Follow MS Bloggers on Twitter
Brass and Ivory, a blog written by Lisa Emrich
Follow Lisa Emrich on Twitter
Educate MS on Twitter
Mayo Clinic's Page on MS
Multiple Sclerosis Foundation
Accelerated Cure for Multiple Sclerosis

Permalink Reply by Lisa Emrich on March 19, 2010 at 11:57am

Hi Amanda,

Thanks for all of the mentions here of Brass and Ivory, the Carnival of MS Bloggers, etc. (I am just now getting around to responding to your kind tweets.)

I seem to be a collector of sorts, helping people with MS to find other people with MS online. If you're on Twitter and looking for MS peeps to communication with, check out the lists I created.

Multiple Sclerosis People

Multiple Sclerosis Orgs, Groups and Friends

Since I write at HealthCentral for their MS, RA and Obesity sites, I personally spend much of my time there in the communities.

MultipleSclerosisCentral.com
MyRACentral.com
MyObesityConnection.com

Patients with MS are actually quite fortunate in that we have many different communities online in which to participate. Some of us participate in more than one or two!! We're a very active group.

Lisa

Permalink Reply by understanding66 on October 21, 2010 at 1:16am

Lisa, I was wondering if you were familiar with any sites related to a problem that I have- I am trying to eat healthy and believe that the MS that I have can improve by eating more organic food and cutting out processed foods. My problem is my weight. I seem to have the opposite problem that a lot of other people have. I constantly hear "I wish I had that problem" to which I say no you don't! I am very thin, have been sedentary for awhile lately due to recovering from a car accident, but I cannot gain weight no matter how hard I try and I don't know how to eat healthy and gain and maintain a healthy weight. I'm at 98 pounds right now and am not real tall, but am in my mid-forties and need to be around 115-120 pounds. Do you know of any information on this type of problem? My stomach doesn't empty properly, which is a lot of the problem and I can't eat a big meal at one time most of the time, but even when I'm eating a lot, I think I'm gaining only to find I'm losing. I have MS and this seemed to start not long after I was diagnosed, but if there is a connection, I don't know what it is. Do you know anything about this type of propblem? Thank you.

Permalink Reply by Lisa Emrich on October 21, 2010 at 1:40am

Hi understanding66,
Most would agree that eating healthy, less processed foods is helpful for MS. It's helpful for general health as well. But it sounds like you have a special challenge on your plate (pun intended).

Delayed emptying of the stomach is a problem which most folks are not aware of. I happen to know a little bit about it because my mother has gastroparesis. She has had to change the way she eats and still loses weight too easily.

I found a nice document which provides suggestions on how to eat well when the stomach doesn't work right. You might find this helpful. Some of the suggestions include eating six small meals instead of three larger ones each day. Avoid high-fiber or high-fat foods. Get extra nutrition by drinking supplements such as Ensure or Boost. Maximize your calorie intake. Eat soft, pureed, or liquid foods as necessary. There are some good-looking recipes for shakes included in the pdf file linked above.

Maybe some of these suggestions might help you get the nutrition you need, especially if your stomach doesn't empty properly. Let me know if there is anything else I can help with.

Lisa
brassandivory.org

Permalink Reply by Kasey on March 12, 2010 at 5:21pm

Thanks for linking to the MSF! That was a pretty good start to the list. I'd also recommend:

http://www.myelinrepair.org/
http://mindsprints.wordpress.com/
http://www.msviewsandnews.org
http://www.mscando.org/

And, of course, all the MSF-related pages linked in my profile. (We're on Facebook, Twitter, Livejournal and Dreamwidth, for everyone's convenience.)

Permalink Reply by Rachaelmt on March 20, 2010 at 11:54am

One of the first CCSVI Facebook groups: http://www.facebook.com/?ref=home#!/pages/CCSVI-in-Multiple-Sclerosis/110796282297?ref=ts
MS Trust - MS Trust Facebook site : http://www.facebook.com/?ref=home#!/pages/Letchworth-United-Kingdom/MS-Trust/133771946939?ref=ts
MSRC for ALL the latest news regarding MS - www.msrc.co.uk
ThisIsMS - yet another place to interact with other MSers and to get all manner of info on all things MS-related : http://www.thisisms.com/
Yahoo groups can REALLY help with many MS things. I recommend MSCured, MS and diet, LDN or just search for low dose naltrexone groups at the groups search page : http://uk.groups.yahoo.com/

I hope this helps all :)
Rachael

Permalink Reply by tartan_miss on September 30, 2010 at 1:44pm

I'll add ones that haven't been added yet, rather than duplicating! : )

Twitter
@shiftms - Twitter account of www.shift.ms - an online community for young (and young at heart!) people affected by MS
@tartan_miss - my Twitter account - I have loads of great connections on it to fab people with MS
@EveSimon - fellow MS HA, blogger, and creator of http://msposse.ning.com
@kevbevw - fellow MS HA and blogger
@tru - a very funny MSer
@mssocietyscot - the MS Society Scotland's Twitter account
@mssocietyuk - the MS Society UK's Twitter account
@MSRC - the Multiple Sclerosis Resource Centre's Twitter account
@MSTrust - the MS Trust's Twitter account

Blogs
http://lifewithms.wordpress.com - my blog
http://forbestresultsmicrowave.wordpress.com/ - blog by Kevin (@kevbevw)

Websites
www.shift.ms - an online community for young people (and the young at heart!) affected by MS
http://www.mssociety.org.uk/ - MS Society UK
http://www.mssocietyscotland.org.uk/index.html - MS Society Scotland
http://www.msrc.co.uk/ - MSRC
http://www.mstrust.org.uk/ - MS Trust

Permalink Reply by scooter24 on October 7, 2010 at 10:09am

patientslikeme.com

they have searches for individual interests.

Permalink Reply by aralis on October 18, 2010 at 11:13pm

http://www.patientslikeme.com/multiple-sclerosis/community

Permalink Reply by jodibean328 on February 5, 2011 at 8:01am

Wow you guys have a great list going here!  I will try to add a few more that have not been mentioned yet!

 

http://www.acceleratedcure.org/

http://www.mscurefund.org/pages/mscure.asp

http://www.everydayhealth.com/multiple-sclerosis-basics.aspx

http://www.erasems.org/

http://www.erasems.org/

 

I also love reading blogs written by people w/ MS.  There are so many so it takes a little while to find your favorites! 

 

I also like "google alerts" b/c you can do one for "Multiple Sclerosis" and everyday I get an email w/ articles from the news.  Good way to keep current w/ MS info!

 

Best, Jodi

 

 

Permalink Reply by jodibean328 on February 5, 2011 at 8:03am

Oh and I can't believe I forgot to plug my own blog.  I write about stuff related to MS pretty often.

 

http://jodibeansblog.blogspot.com/

Permalink Reply by lesionjournals on February 5, 2011 at 1:35pm

This is becoming a great list! I would like to add the following:

• the mess that is my mind by Sherri Stakes
• A Stellarlife by Diane J Standiford
• The Lesion Journals that's me! 
• @MSFriends
• @PositiveAboutMS
• @MSvillageCanada
• @awkwardbitch
• @BLUnsaid7

I'll come back and add more as I think of them.

 

Best,

Christie

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