New to forum - have concerns

[sllowe]

Hi everyone,
I'd like to say to all that I've enjoyed reading through many of the posts/responses here over the past months and notice you are quite the family and support mechanism - it's wonderful.  Quix, I've read so many of your helpful (along w/another that I haven't seen on lately) and expert advise that I have to say thank you from me also.  I've noticed the times in your writing that you were just thoroughly just shot, but responded anyway - your a true Trooper and driven person.
I've only ever posted once in the Neuro forum and decided to join here today. A brief history of me, is my issues started in March, and from what I've read, it's comparible to all of the Neurological issues and limitations described, and experienced depths of impairment that I could not even believe was even possible.  I've gone through testing, labwork, mri's w/and w/out contrast, evoked potentials, nerve tests, and a spinal tap.  I have 3 brain lesions/demylenating plaques and 1 in the spinal cord.  Oligoclonal banding was present in the CSF and not in serum, labwork ruled out other diseases, and evoked potentials were neg. 2 doctors are suggesting MS.  One in Jersey, and one from JHH. My concerns are with therapy, and obvious future issues and the need for them.  My main question - is there any way of knowing for certain that the immune system doesn't "get back on track." Can the DMT's modify your immune system and make you more susceptible to future ailments.  I haven't fully accepted the dx, and am confused because it seems that the options are only meds or all natural remedies, not guarantees either way.  
Thank you so much for taking the time to read this.  I have many other perticulars in my reports if anyone is interested.
sl

[meg321]

OMG, this was really very old, before my time.  I have no idea why I even read and posted to it...but its very common for me.

hugs, meg

[meg321]

LOL...makes more sense now, I remember this post now too.  Sorry about pulling it up again but I guess Lu likes it...I feel better now.

meg

[Lulu54]

This is the first I've read your early post, Shell.  I'm glad you pulled this up to share.  It prompted me to go back and read my first, as well, and I got a big smile reading your welcome.

my first is at -

http://www.medhelp.org/posts/Multiple-Sclerosis/What-should-I-ask-PCP/show/581550?personal_page_id=5829

And then I got stuck reading many more of my early posts.  Boy, have I ever learned a lot over time!

[sllowe]

Meg - this is one of my 1st posts. You must of clicked in it from the link I posted.  I posted it  because I wanted all to see how we've all found each other in a similar manner - similar stories and beginnings here and that was 5 years ago, but it all still rings so true.

I understand why you must be completely confused if you took this as a fresh new post, lol
(((Hugs)))

[meg321]

I don't understand any of this, as I don't understand much of anything nowadays.  Maybe if I just see what everyone else is doing, it will help.

hugs, meg

[jenn38018]

Sorry, I mean a seperate timeline for each person.  I think that would be easier to look up a specific person.

Jenn

[Want to feel well!!!]

Don't apologize!  We all have long ones...well, that came out wrong!  

[sllowe]

LOL!!!!!

[sllowe]

I'm sending in a minute. . .it's too long (for such a short time of it). I'm apologizing in advance. . .

[Quixotic1]

Okay. The Timeline Guru has spoken.  Each person who wants to should have their own Thread - from the main page - with their timeline.  For the subject, write "TIMELINE - your name"
eg.  TIMELINE - Quixotic1

I will do one also.  When I wrote my story I did it as a story.  I still think that is another useful thing, but used for a different purpose.  It's a lot of reading just to see the illness unfold!

Q

[Want to feel well!!!]

Gmail also throws a lot of stuff into the SPAM folder also, so make the subject line clear as to what it is.

[Quixotic1]

Great point!!!

Everyone - Feel free to change any specifics which personally indentify you when you post anything!

Also - I set up a specific account (free to all) on Gmail.  That is the one I give out here.  So any postings on that email I know are from the forum.

An alert - Gmail clearly scans the messages for key words.  Then topic-specfic adds pop up which pertain to those words.  I'm sure it is done electronically, Gmail is HUGE, but it can be pretty funny,  I once referred to myself as "narcissistic" - I'm sure nobody had noticed, lol... and one of the ads was for a psych testing site showed up saying: "Know Someone Who has a Narcissistic Personality?"  then come to psychtest.com or some such.  I can't wait to see what things pop up.  I was telling someone I had new babies. (I have two nests of racoon moms & kits under my front porch).  That message was accompanied by ads for "new mom's and for baby clothes."  It can be hilarious.  It's why Gmail is free. (There was one little dress which would be darling on one of the babies...)

[Want to feel well!!!]

I'm not Quix or jenn, but yes, just start a new posting fromt the main MS forum page.

[Quixotic1]

Jenn, I need you to be more specific.  A separate timeline for each person (my favored) or one big thread with everyone's)?
Q

[Want to feel well!!!]

What if the poster starts a new thread with his/her name along with Time Line...like
"TIME LINE jenn38018"  or  "TIME LINE sllowe" and we'll know to check it and use that thread to just work on the time line.  OR  like me, I did not really feel comfortable putting my entire time line on the forum...trust issues I guess...nothing against y'all cause I love y'all now, but just in case anyone has issues with posting it, we could set up an email thing. I'd be willing to use my gmail account, but I know most people want Quix to review the time line.

Okay, I'm babbling...    

[sllowe]

Since I'm a rookie here. .. I have to ask - so, I just post a new on the main (MS) forum and include my name and words timeline, etc?

[Quixotic1]

I don't think we have decided on a format, but in the meantime we have insisted on the timelines.  I think, looking back at it, it's great to have a person with their own Timeline Thread.  Like we have with Super_Sally.  I also think it is nice if the thread has the word Timeline in the title so when we go to answer or review who someone is, we have the Timeline as the first post and it's easy.

What do the rest of you think? Wanna, and people who have like reading the timelines...A separate thread for each person?  so all of the comments pertain to that person's story OR try to gather them together in a "Everyone's Story Timeline."  We tried to do that with the Diagnosis Thread and ended up with a lot of conversation between the stories.

We need votes here.  We're looking for a way to keep people easy to find and to be able to frefresh our memory about who each person is and what they have been through.

Speak up, one and all!

Quix

[jenn38018]

I think that is a great idea!  I have tried to send people to previous posts of mine so that I don't have to retype my symptoms and timeline, but a lot of times I can't remember which post it was.  Plus, the forum is getting so big, we really do need a way to jog our horrible memories when talking to everyone.  I vote yes!

Jenn

[sllowe]

Hi there, thank you too for the welcome, and yes, it's all so helpful.  I live in NJ.  I'm getting the timeline together, but wanted to ask the group - do you want it posted on this thread? Or, start a new? I was just not sure if you wanted them all on one of the previous (if I remember, there was one that had a few). Let me know when you can. Thanks,
sl

[SUGAR~~]

Hi, I am new to this forum. Unfortunately I did not start off on a good note. But I am glad to be here. Everyone is very nice and helpful as well. I have been sick for about 11 years. Dx was probable MS. Now they are not so sure. But any way, I have talked to numerous individuals on various kinds of therapies. They all have had their share of problems and experiences with different drugs and so forth. Unfortunately, it is or seems to be a trial and error thing. The best advice that I could give you, is to find a MS specialist and see what treatments they advise for you. They are the best ones to discuss your treatment with. Some people do well on a certain drug , where others may not tolerate that particular drug, quite as well.

Welcome!!!

Hope this was helpful and has given you a broader perspective. May I ask in which state do you live?????

[sllowe]

Morning all,
Thank you again for your open arms welcome. I've just begun reading about your timeline process and clearly see the desperate need for it.  Also, as we've experienced, it's not easy to know what to ask, nor interpret reports, but I've given it a lot of time in my case. Seems the labs techs and radiologists play a critical role in dx's when it comes to MS.  I throw that out there (food for thought for the forum) just off the top of my head because I believe it will be helpful to discuss details for those who have received diagnosis and those who are still in limbo.  I'll be off line most of the day, but will get together my info and post hopefully towards the early evening.  Looking forward to talking soon.  You all, just amaze me, with your committment.
sl

[Quixotic1]

Hi, I've run across you several times today, but I'm not sure I spoke to you.  Thank you for your very kind remarks about my and our posts.  We have created quite an extraordinary group and community here.  I personally sampled several MS forums and found them hard to feel a part of - maybe because they all become so big.  This one is fairly new (3 months) and we have set about creating something with atmosphere and openness and real give and take.  A lot of people who have landed here have had some real issues with difficult diagnoses and with dismissive doctors.  But it also sounds like you were lurking for a while and may know us better than we know you.

So, I would like to talk with you about "treating MS" and exploring what's known.  Tonight is not the night.  I'm amazed at what has happened on the forum recently and am exhausted right this minute.  It is my passion, as someone said, and I never stay away very long.  So, I would very much like to hear what you are willing to share about your comparable neurological issues and new disability.  I do know what you mean.  8 years ago when I was the only pediatrician in 20,000 square miles of the Nevada desert, working 60 hours a week, I never dreamed that now I would be spending 16 hours a day in a recliner and only leave the house once every week or so.

So if you would be thinking about how what has happened to you fits in our famous timeline, we'd appreciate it.  That is a tool that brings the whole process and experience into clarity and makes it easy to ask meaningful questions.

Thanks again for jumping in. I hope to know more about you tomorrow.  This is quite a road we were thrust upon, and I have words to say to the maintenance crew!

Quix

[doni54]

I am new to this forum and don't know much yet, I haven't started the road to a dx yet.  I just want to welcome you and let you know you have come to the right place.  All the people on here are wonderful, this is a great place to be for medical and more importantly - moral support.

Good luck to you
doni

[sllowe]

Thank you for the warm (and speedy) welcome!