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Date Posted: 23:27:23 05/24/00 Wed
Author: Chloe
Subject: Re: Am I in the right place ?
In reply to: Sheila 's message, "Am I in the right place ?" on 14:20:59 05/24/00 Wed

Hi Sheila,

Yes you are in the right place. We are just in the midst of making a transition from primarily being an email group to being more of a forum group at this site (although with emails welcome too). Sorry that things have not been clear. I will try to explain how our group works in some more detail.

Basically, our group has two main features -- an email list and this forum webpage. Both provide means for us to ask questions, share stories, feelings, concerns etc. You should feel free to use either medium, although we are trying to switch more to the forum as this saves everyone from having very full email boxes all of the time. Overall, things have been running relatively smoothly and we have a very cooperative and anarchistic way of organizing things and adding new features to our group. For instance, I coordinate new members and the email list, Denise created and runs this forum for us, Celynn keeps a detailed address book and Jenn (Buzz) has recently created a photo gallery is conducting a symptom survey as well. Everyone here offers tremendous compassion and knowledge on a daily basis, and I hope that you will come to participate often in our group however you feel like.

As for your specific question about the stories/member profiles -- when someone signs up, I send them a letter of explanation about the email group and our forum webpage, as well as all of the intro letters that I currently have for our members. I also send an email out to all the members telling them who has joined. Usually, the new member will post an email back to our whole group with their story/profile shortly thereafter (which I then copy and paste into my central database). But, not every new person has the time or feels comfortable enough to send out their story as soon as they join. This is why you don't know anything yet about your newest members -- actually none of us do yet, and we hope to learn more soon! :)

Sheila, I really enjoyed reading your intro letter, and am hoping that your spinal MRI yields some answers as to the nature of your problems soon. I can't believe how long you have been in "limbo" with various sort of Dx! I was also interested to see that you have Raynauds, because shortly after my onset of neuro problems last december, I developed this in my hands. I have been trying to figure out if it is related to my other problems, or just a bizarre coincidence. It seems that in the early stages, MS, lupus and others can present with a lot of vague symptoms and with a lot of overlap between them -- which makes our lives incredibly frustrating as we "wait and see" what how our future pans out. I sincerely hope that you, like all of us, do not have MS, but most of all I hope that you get an answer (or at least more closer to one) after this next MRI. I don't know how you feel, but at this point I find the not knowing the hardest part.

Anyway, this turned out to be a long response to your question. i hope that you write again soon! :)

best,
chloe

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