I need input from all of you

[Quixotic1]

I am now finally in a position to begin submitting some of the informative posts that I have written to be placed in a permanent spot at the beginning of the first page.  It will be many small (or epic) essays grouped into 4 or 5 headings, like Diagnosis of MS, Symptoms in MS, Living with MS, and maybe some of the stuff we have discussed about being in Diagnostic Limbo.

I need your votes for which essays rightfully belong.  They won't take up room on the front page , but will be accessible by clicking on a Global Heading like "FAQ."  We can add as many as we like.

Heather and others have also written very important pieces that we can submit also.

This next week I will be editing, cleaning up and correcting the ones I know should be there, but, lol, I often think everything I write should be etched in stone.  (me???? an ego???  nah..)

I would also like to hear from people who read our forum, but don't post.  What things have you read that you want to have access to and reread?

Quix

[RIDDICK_777]

This is great Quix, i am not going to suggest anytghing right now, think it would be best left to you personally as i know you will make a great job of it all, although others may have some suggestions, i find everything you have to say of great help and very informative, i think you will no doubt knoew best soz for typos Quix and thanks again for the help you have given me i will let ya know what my doc says after i have been on the 9th and discussed things take care Quixy girl love ya David.

[Amyloo]

I definately think a "limbo land" post is necessary, and also how to approach the whole "trying to find out what is wrong" thing, from keeping your head on straight about symptoms and worry, to finding the right doctor and people to support you.  All the ones, really, that you have listed above.  Plus probably 306 or so more!   I guess bottom line; you know.  And, this is really cool of you to do. Love to you Quix, Amy

[RIDDICK_777]

Sorry i have no input for you right now but i dont seem to be able to get my head in to things at the moment and am so tired out and sick with everything but i know you will understand
David.

[ELT]

   This is a wonderful idea.  
   First off, the posting, Can You Have MS Without MRI Lesions?, from 08/30/07.   'MRI's, Lesions and Symptoms, from 08/22/07.  History of the Diagnosis of MS, from 08/12/07.  Are the McDonald Criteria the End All @ and Be All, from 08/12/07.  Treatment for MS Parts 1 @ 2, from 12/14/07.  MS Mimics, Parts 1 @ 2, from 12/01/07.  How Similar the Symptoms of Fibromyalgia and MS really are, 11/29/07.  
   I'm quite certain there are many more, however my eyes are complaining about me changing the pages, so, I'll stop there.  Perhaps parts of these postings, if they are too long, at least.  They were quite informative, and quite well written up.  
   Good luck with it all.  :)

[ELT]

One more, lol.  The Proper Care and Handling of a Neurologist, 01/01/08.  There, now I'll rest my eyes.  lol :)

[Quixotic1]

I left out a MOST important bit of information.  Heather has been the driving force to get this information permanently at the top if the forum.  She began contacting MedHelp more than a month ago and was a big influence in their decision to allow this kind of format change.

So, if all this sounds like a good idea - thank Heather!!  She has become the greatest architect of what this forum should and can become!

Quix

[Rose1963]

I don't post much on here, but I read alot.  I think the above mentioned essays would be most helpful.  The forum definitely needs this information on it for people to review before entering into the forum.  

[cherby]

You are an awsome lady!!!! Pretty brilliant as well.

I need to know what to look for now that i have a copy of my blood test. What is indicative of ms dx???

Also the ser and ver test's that a person having neg results does not rule out ms???

Thanks and I look sooo forward to your wonderful new information

Cheryl

[Quixotic1]

There is no blood test that suggests MS.  They are all done to look for the other diseases that can closely mimic MS, like clotting disorders (causing small strokes), autimmune diseases like Lupus that can cause vasculitis in the brain, B12 deficiency, certain infections, and certain metabolic diseases.  Q

No, negatives evoked potentials do not rule out MS.  They help point toward MS when they are positive.

[cherby]

YOU ROCK!!!!!  Mine were all in normal range except red blood cells . Im going for the spinal mri and sleep studynext week and from there the lumbar punc.

I swear w/out all of you I think I would be locked in a padded cell in a straight jacket! lol lol

thanks for all your help
Cheryl

[Ley5792]

Sx mimic MS. Undiagnosed. I have been reading the forum for a while now, I really enjoy the genuine heart that goes between all in this online community.

I found such comfort in the subjects that touched on everyone's journey to diagnosis..or their journeys thus far.

[Wobbly]

I think you have this one down pat...sounds great to me whatever you think is best.. I think I'm too new here to know what would be best.  I just know I enjoy reading and talking to everyone here.
Thanks again Quix  your the greatest..

Andrea

[Heather3418]

MRI, lesions and symptoms, History of Diagnosis, McDonald Criteria, MS Mimics to name just a few.  Quix, I believe that all of the posts that you have started that talk about the various degrees of MS and stages, symptoms,etc., and the post Neurologists exams by Rena705, should be a permanent part of this new feature.  

I know that you researched everything you have written to make sure that it is accurate, so I feel that it should become part of this new feature, since it is such invaluable information, just as YOU are....invaluable!!

Thanks,
Heather  

[Heather3418]

No member is "too new" to cast their vote for the informative posts they want to see featured under FAQ's.  Please feel free to tell Quix what you would like to see, so you too, can have easy access to information about MS. Quix would like the input of ALL members.

Heather

[Want to feel well!!!]

Cudos to you!  Thank you for all your hard work.

Wanna

[pennst8r]

Great idea!  I'd love to see the testing that SHOULD be done and what is considerred normal or abnormal in these tests. Also any tests which should be at some point in Dx be repeated.

Thanks

Penn

[cjacks]

I agree with all that are mentioned above.  I'm sure the ones I am going to sight are here someplace .  What type of MS do I have? 12-20       Anatomy of a flair-up! 11-16    and two that I'm not sure where they belong but it would be useful and insightful for all if we had them easily at hand, somewhere they could be added to ????   Regroup -  Heather 11-4-07         Who are you ?   JI Jo  10-12-07

This is such extensive work ,thank you for giving so much of yourselves to this project. If I could I'd sing you a song or paint you a picture or take you out for dinner or a cruise , beyond the moon... you two are all heart .....   You deserve only the best ..

Thank you          

Jo

[Jazzyfizzle]

Thank you Heather and Quix!


Jazzy

[Momzilla]

I don't want to sound like the wet blanket here.  And I am loathe to write this.  I know many do not know me that well because so many are new, and do not know how much I absolutely LOVE this forum.  I am proud of it.  It is an oasis for so many.  A haven.  I truly feel a connection to this little corner of the world.

But I am wondering if the FIRST page is the best page for this kind of information.  I know it has been talked about for a long time, and I have been thinking, it IS GREAT IMPORTANT information.  But, I really think that what sets us apart, is our warm welcome and caring to people who are lost.  I can't picture what it would be like if I was in Limbo, wondering where to turn, and I went and found this beautiful forum, and what I saw was postings of wonderful information, instead of wonderful people.  I think the people are what makes us stand out, then the information we give is necessary, of course.  I don't want to discount that.  I hope this isn't coming out wrong.

I wonder if there is a way to put these posts on another page, say the second page, or something.  I don't know if that would make sense.  I thought about the last page, but it takes SOOO long to get there.  

Just my two cents.

Feel well you smart people, you.

Zilla*

[AMO]

goood job girls
i have read off and on the medhelp forummm for may years, this will be a wonderful addition.
thannks , amo

[Heather3418]

Let me reassure you...these posts will NOT be all over the front page of the forum.  They will be under a section called Frequently Asked Questions.  It will be  "button" that you will push on to view these posts.  They will NOT take the place of what the regular forum always looks like and will not in any way disrupt the way people are greeted now.

Heather

[Momzilla]

Whew!

[treebranches]

I think that's a fantastic idea.  I don't think there would be anything wrong with it being part of the forum, either, and if the "welcome" factor were an issue, just make a welcome piece, too like Heather has posted before.

Having that would probably cut down on a lot of posts too, and there could be intro posts for new people and updates and etc.

I think it would make the forum a bit more organized.  ;)

[nette573]

I think it is a wonderful idea to have the info at a touch.  It would be alot easier to have it like that instead of searching for it!  Great!  Thanks Heather and quix.  Lynette

[RIDDICK_777]

You can count me in for all the info for the limbo landers, and the rest its all good, luv David.

[doni54]

You girls are more than super, you are just the cat's meow!

Thank you for all your hard work!

Loads of Love and Many Thanks!

doni

[Heather3418]

It sounds like you all are excited about this new feature.  Quix is doing ALOT of work, trying to get the posts ready for "publication."  We owe her SO MUCH.

Quix, it just thrills me to see that so many members are looking forward to this.  I am too.  And thank you for YOUR HARD WORK, my dear lady.  What in the world would all of us do without you?  Hey...I don't want to find out.  

You have definitely found your forte on this forum Quix.  Add that to the "reasons" you were "picked" to have this disorder.  Something good has come out of your diagnosis of MS.  Something good has come about to make some of the pain and discomfort you deal with, seem somewhat worthwhile.  

Much Love, Heather

[sllowe]

I think I have some thoughts, just want to get through all the others to make sure I'm not repeating what some have suggested or voted for.  Off the top of my head, I'm thinking coping techniques, but then again, those may very well have to be some links or something to some good sites that offer ones' we feel help us. . ..

I'll try to get my thoughts to print sometime the weekend. . .

hope you are all well!

SL

[SOONERMOM]

Please don't leave out your latest post "Musings.."  I really loved that one!

Stacey

[essdipity]

This is indeed a great idea, but it doesn't have to be 'written in stone' from the outset. We should expect some changes and updates as time passes. I hope MedHelp will allow for that.

ess

[young at heart]

WHAT A WONDEFUL INFORMATIVE IDEA.

SO MANY ASK ABOUT THE DISEASE MODIFYING MEDS,COULD THIS BE INCLUDED AS THERE IS SO MUCH CONFLICTING INFORMATION ON THE WEB ABOUT THESE MEDS.

IT SEEMS NOW DAYS THAT THE NEURO'S TELL THEIR PATIENTS TO GET INFORMED ABOUT THESE MEDS.AND ARE LETTING THEM CHOOSE,I WASN'T GIVEN A CHOICE IT WAS REBIF AND MY NEURO GAVE ME LITERATURE ON IT.

JUST A THOUGHT

T-LYNN

[monotreme]

I would like the spasticity post from this week included, and if possible, the "What I went through to get a diagnosis" post .

Thanks,
Craig

[grannyhotwheels]

I think that this is a wonderful idea.  Heather, thank you so much for all of the hard work that you have and will put into this.  

Quix,  the post that ELT mentioned are very much needed.  I know there are many more and I totally trust your judgement on what to put.  

Best to you both and I love you both for all the work you put into our forum.  You are what makes it such a great place to be.  It is the best forum on the Internet by a long shot.

I'll be praying,
Carol  

[vanhawk48]

This is  absolutely  fantastic . I myself  cannot  wait  to  get  into this  reading .
I have been  reading  posts  of  this  forum  for  a  while  , and  all  of  them  are  very  educating .
Quixotic and  Heather  are  fabulous  . I  am intending  to  stick  with  you guys .
Already  made  a  decison  to  contact  my  Neuro  on  Monday , and  start  being  more proactive  in  my  fight  with  MS .
Thank  you  Quixotic  for  all  you  do for  us .
Vanda

[nanadee]

I myself am a newby here , but have gotten some great information from this  forum. Best one I've found, that I actually post to, LOL!
I'm all for your ideas!
Nanadee

[kitten o]

YOU GUYS ARE THE BEST.
KEEP UP THE GREAT WORK HERE.
KITT