advocacy for those in limbo

[IUMOM2]

I've been thinking about those of us in limbo. I know there are many of us here who fit that description. I know the NMSS willingly gives info and support to those in limbo. However, it seems as if the NMSS, neurologists, and other groups need to do more to help those of us in limbo. Perhaps a second look at the criteria?

The McDonald criteria was created to supposedly help diagnose more people than the previous criteria. However, it seems as if it's sort of done just the opposite for some of us (especially those who don't have the large, or numerous lesions). I realize we have an over representation of limboers both here and on other internet boards, but the problem does exists and does affect many people.

I thought maybe if we brainstorm we could come up with some sort of plan (petition?) to take to one of these groups. Perhaps having some testimony from those who languished in limbo for a long time, with accumulated disability would be helpful?

So, what do you all think? There's power in numbers, right? I don't know about you, but I feel as if I have to make some sort of meaning (aside from the personal growth) to all of these years in limbo.

Maybe it's a lame idea. Any thoughts?

[EL18]

I'll second that.  A great idea....may be then we could get some treatment....! It's not fun living in limbloland nor is it fun without treatment which could improve mine and many other's situations.

Count me in...!

[Jazzyfizzle]

Sounds like a wonderful idea :)


Jazzy Fizzle

[6-paq]

I agree that the "Revised McDonald Criteria" possibly needs to be revised again!!  

I used to pride myself on being a very logical person ~ I used to work as a Computer Programmer/Mathematician, but that darned McDonald criteria just is so confusing for me.   (Thanks Quix for "simplifying" it for us).  :-)

There are so many different "paths" to diagnosis that it has my head spin!

I do realize that sometimes it IS difficult to give that diagnosis.  There are a high number of people here who are having difficulty in getting the answers.   I'm one of those in a "wait-and-see" mode since I have only 2 lesions (with only one being suspicious for MS), but all other testing is "normal".  It's already been 6 months and things seem to be "progressing" for me.  How much longer do I need to wait for some answers and/or treatment??

I don't think it's a "lame idea".  Interested in hearing others opinions!

Take care!  Pat :)

[uk2]

Hi

I think its a great idea, im in the uk and its the same over here limbo land for me, i had my MRI today and was hoping i would get the results but was told i have a two week wait till there sent to the consultant and another week after that till i see him!! Im not doing to bad at the monent but a few weeks ago it was a different story!! its our life they are playing with.

Sorry for the venting

Great idea

[floridamom2]

I would love to participate and do totally agree that there are too many of us here with no definite course of action but to sit and wait for a possible relapse than may or may not bring more disability.

I remember T-Lynn and Quix were both people who took a long time to get dx's and they both lost function while waiting for this.  

I am having a bad brain day today but will put some thought to this in the near future.

Take care!
Kristin