How Many Limbolanders Are Attending An MS Support Group?

[MsWobbles]

Hi MSers and Limbolanders,

It has been suggested on this website that Limbolanders attend an MS support group to learn more about MS diagnostic options as well as to gain valuable insights on their local MS neuros.  I have decided this is a great idea:  I will contact the local MS organization for info on MS support group meetings.  Then I'm going to start attending.  

Because I have donated to the local MS group in the past and am symptomatic, I was invited to an MS dinner months ago where I did actually gain some valuable information.  For one thing, I realized that many with MS come across as essentially non-afflicted  people:  They can walk heel-to-toe, do finger-to-nose accurately, and get around essentially as non-MSers do.  It seems they would have essentially negative neuro exams - yet they have MS!  Actually, I was way more symptomatic than the MS-diagnosed person I was sitting next to.  It seemed so unfair!!  

Anyway, I wanted to suggest to other Limbolanders that following this website's suggestion about attending an MS support group is a great idea that might help lead to a diagnosis.

WAF-LL (Limbolander)

[wadeheather]

Wow, how better could you possibly sum up how I feel?.  My husband actually said the word "hypochondriac" tonight. Freakishly we were talking about freckles and melonoma... I'm afraid to go back to the dr because what would she really say? I feel like a pain in her rear end. Someone mentioned the "old you."  I really am not sure what that was, and it's only been a few years.

Thank you.  All of you. For at the very least not letting me feel very VERY alone.

Love you,
Heather

[Fluffysmom]

What a timely topic!  I was just feeling miserably lonely and wondering if I could go to an MS support group, being a limbolander with multiple issues, and thinking that I wouldn't fit in.

And WAF, you brought it up yesterday when I wasn't on the forum.

I think I'll take a look and see if there's one anywhere near me, and see if I can get up the courage to go.

Kathy

[sunshine8]

Anyone know of a group in the Lawrence, KS area or KC?

-Amy

[CheeserNurse]

Don't think there are too many around here in Northern, IN unfortunately... :( Plus, I have my young age going against me...

[Lulu54]

I believe if you check the NMSS homepage you will find a link to local chapters ... here' s the address -

http://www.nationalmssociety.org/find-a-chapter/index.aspx

If you live in the Uk there is also  their site that lists events going on -

http://www.mssociety.org.uk

One way to meet others in a less formal setting is to attend the presentations, usually underwritten by the drug companies- you can find them on each mfgs website.  You don't have to be an MS patient to attend - if you want a good cover jinstead of explaining that you're in limbo, just tell them that you have a friend  (you do in all of us here!) that has MS and you want to learn more.  

If you're comfortable, put up a note here asking if anyone knows of groups in your area - you might be surprised with all of the people who stop through here.  

Also google ms support group and your town and state name and see what might pop up.  

Good luck,

Lulu

[Tammy826]

Great Idea!! I know us limbolanders could sure use some support !! Between feeling just awful most of the time & not knowing why to having family & friends basically turn their backs on you because they can't physically see anything wrong to Drs. that don't seem to care it can make you feel pretty alone & sometimes even sicker! My mother informed me the other day that she can't believe that I'm that sick ALL of the time since if it REALLY is MS , it goes in remission so I should be the little engine that could! Of course she thinks I went from a workaholic mom that raised 4 kids by myself to just being lazy & its all in my head. It feels like everyone has disappeared the last 3 years & it can be hard to take. People think you just want to be sick when you would give anything to have that "old you" back. The knowing somethings wrong & not knowing what it is can make you question your sanity. I have also been told its just depression, well yes, I am now thank you, but depression doesn't cause you not to be able to walk, ect. or at least that I'm aware of. I was one of these people that always thought sickness was "mind over matter" & boy... I'm finding out that 's not necessarily true. Please let me know how you go about finding a support group as I live out in the country & I'm not aware of anything nearby. God bless you!

[Ufrustrated2]

being in "demyelinating disease of the CNS" limboland, i don't quite feel right going to one here.

i will say, attending this forum, has radically given me new hope, insight and tools that have quantum leaped me in dealing with this.

i will call around, but knowing me, i don't know that i will go until i have a diagnosis besides what they now have written down.

good idea, so thx