***MEMBERS Question regading Topics...

[sllowe]

* As a veteran MSer, what type of topics are you interested in learning about other than what we bring up daily, or weekly, or have available in the Health Pages?

*  If newly diagnosed MSer, what topics do you feel would help you with daily living?

Limbolanders - these topics will equally be valuable to you too!

Will you please list?
Thanks!
-Shell

[Lulu54]

thanks, Shell.  I for one am looking forward to these discussions on relevant topics.  Yes, we can be there for the new people needing answers but we also need to be building our own knowledge base.  Thanks for taking this on. L

[sllowe]

All -

I will begin to add discussions that are topic specific to the wants you identified here.

-shell

[sllowe]

Recap:


*  Current/Ongoing Research in MS

*  LOMS: Late onset MS in 50+
     -Prognosis as a result of DMDs

*  Research in DMDs
     -Theories
     -New and promising research with injectionless DMDs

*  Individual Differences in MS (i.e., How do I live with this?)
     -Lifestyle changes/coping mechanisms
     -Daily living tips (making tasks easier)

*  Relapses (Changes that can occur during flares) (How to know)

*  Solumedrol side affects

*  MS symptoms or non-MS problem/symptom

*  Coping (daily living) with atypical problems associated with MS

*  When to call the doctor

What you have given so far is excellent. Off hand, I'm remembering a few from this list that are in past discussions. We can now work on organizing the old, and then add the new.

-Shell

[Sidesteps]

<---- limbolander here.

I like to know that what I'm experiencing is *typical* or *not* and what the veterans would do under the or under our circumstances.

I also think we have a hard time determining when to call the doctor or just ride the wave...because we are scared and many times feeling as if our symptoms are discounted.

I also am researcher and enjoy finding answers or figuring out what my symptoms might be - spasticity, dystonia, ms hug, etc. I NEVER would have known some of my symptoms were typical of MS without the health pages and veterans here.

[Lulu54]

how about ways to live in the present.  Not yesterday, not tomorrow, but mentally being here today.  I hope tht makes sense.

[maxthecat9196]

Oh, I forgot to mention these:  Ideas for how to cope with some of the more atypical problems associated with MS.  And if possible, how to tell if I am having a flare, or if the the last one just isn't going to heal as well as it did in years past...  It's been odd, but since June I can't always tell if I am feeling the same kind of awful, or if the new symptoms are part of a new flare.  

Do people with SPMS get flares the same way as RRMS?  I am currently recovering from one that kind of sneaked up on me...  

Tammy

[maxthecat9196]

I am still interested in just about everything.  What you use to make tasks easier on a daily basis.  New and promising research.  Anything that might not involve a needle!!!!  And of course, just getting to know all of you.  

XOXOXO,
Tammy

[kerrtelli]

Changes that can occur during flares

Solumedrol side affects

Second guessing - symptoms verse normal

Kerri

[sllowe]

Ok, Gathering the list.........Do I have this right so far?
-----------

* Current/Ongoing Research in MS

* LOMS: Late onset MS in 50+
     -Prognosis as a result of DMDs

* Research in DMDs
     -Theories

*Individual Differences in MS (i.e., How do I live with this?)
     -Lifestyle changes/coping mechanisms

-Shell

[beachcomber13]

I am definitely interested in research. Both drugs and theories about anything related to MS. I am super nerdy. The more esoteric and totally inapplicable to everyday life, the better. ;)

But being newly dx'd... well, I'm kind of wondering how I can live with this. I know that all of you do, so I'll find a way. But I get scared sometimes. All the people stumbling around at the MS dinner last night kind of freaked me out. I'm used to being the only one stumbling around!

I don't want anyone to be fake or pretend it's not hard. But I need some hope. The problem is that I don't really know what to ask.

[Lulu54]

MSQR is no longer being printed - you will now get it electronically.  This is a good time to remind everyone to do the fall survey.  I would love to get a print copy, but it is no longer done. :-(

This is agreat question, Shell.  I think there has to be discussions we can hold here that focus on the bigger questions/issues of MS rather than just the diagnostic (is this MS?) questions.  We're happy to answer those, but it feels like a lot of other topics could'/should be included in our chats.

[tingletingle]

Latest and greatest research is always interesting for me. I too would like to know if any new studies come out to show a better prognosis for the older gents with MS as a result of the new DMDs.

But really I come here to share stories and feel as if at least someone else understands so I am not alone, the hope, the love and the laughs ( which are too few at times).

Thanks for asking Shel

Blessings
Alex

[Mike_Shuswap]

Info about late onset MS. LOMS is MS that shows up in people over 50, and I know there are a few of us in here.

[sllowe]

Oooh, me too! Love the quarterly I get in the mail too! Thanks, Jens!
Excellent - This is a good start!

Who else? Please list!

[jensequitur]

Research is my favorite thing.  I love hearing about the news coming out of ECTRIMS, or the MSQR quarterly.  I may not understand it, but it sure is interesting!