Welcome Everyone to the Forum!

[Quixotic1]

I'm glad to see so many people checking in, though I don't like the stories they tell... :(

Not to be outdone by Momzilla I had to spend the last 5 hours in the ER today.  I was sitting here talking to you guys when my right lower leg got really uncomfortable.  I've been keeping an eye on it because the foot started to get petechiea all over it several weeks ago.  Then the foot and ankle started to swell  a couple of weeks ago - no pain, no injury.  But the foot was looking dusky and mottled with good pulses.  I figured it was part of the MS neuropathy because it had started tingling.

This morning my calf became swollen also and mottled looking.  I finally decided to look up DVT - Deep Venin Thrombosis (What!?  I was a pediatrician!!!  Little one's don't get those!  What do I know?)  Some of the articles said they could occur without pain (Awww, s***!)  so we took me over to the ER and had the darn thing checked out and ultrasounded.

Good news - No DVT!!  :)

Bad News - All together now....no diagnosis.  Of course.  The ER doc surmised it might be like Reflex Sympathetic Dystrophy without the pain (Pain is the hallmark of RSD, I think)  He thinks it is probably a part of the MS, which is what I thought all along.  I should listen to myself.  I'm a good doctor...

I'll tell my MS neuro about by fax on Monday.  Maybe I could just fax him the foot....it's a 40 mile drive.

Anyhow, I'm beat.  But, here is what I would like to do.  Many people have said that one of the most useful things they find on the forum besides the answers, support and comraderie are the posts where we all tell our stories of how we came to diagnosis.  Many of those are now so far back that people aren't going to see them.  

So I am going to start a new Thread and copy my "What it Took to Get a Diagnosis of MS" post to it with appropriate updates.

Sherma, Lynn, Siddy, Karzme, GrannyHotWheels, doreenA, SHY, and any lurkers who have a diagnosis if MS was one of the possibilities - Would each of you post a copy of your "story" and put with it?  I think we should do this every few pages.  It will be a great resource for new people and a way for everyone to stay acquainted.

I hope you agree.  I'll post mine.  I'll talk to everyone tomorrow.

Quix

[MedicGirl]

I am new here, but I wanted to say I hope you feel better.

[T-lynn]

Start listening to your body,even though your a physician you still need to get medical care when needed,especially before it gets out of control!!!!!!!!!!!!

I have some petechiea on torso,spots here and there.GP seems to beleive  its auto-immune related.Had severeral blood test to rule things out.

It would be costly to ship that foot.But do talk to your neuro.

Take today off and relax.

[Sherrizim]

Hi Quix,

I'm glad to hear it's not a DVT....but no diagnosis?!!?  I hope your MS neuro can tell you what it is without requiring you to ship your foot to him via Fed Ex (that can be so expensive....) or see him in person.  And take care of yourself....

S~

[floridamom2]

Please take care of you the way you would have each of us take care of ourselves!  You are a wonderful person and doctor and I am so glad I have found you and this forum to identify with on this journey.

You are such a shining example that Helping others is the key to fulfillment and I feel blessed to be able to share in your life.

Take care, Kristin

[grannyhotwheels]

That sounds like a great idea!  I would love to read others stories and compare notes.  I hope that you will stop and listen to your body.  You worry way to much about us, although I do appreciate it very much.  We worry about you to, so take it easy and I hope you are well soon.

Granny Hotwheels  (carol)

[Siddy1]

okay, no problem.  I will rewrite it from the beginning including the mishaps along the way.  I type with one hand usually so it will be a bit slow.

[Quixotic1]

I'm glad you like the idea.  If you would, Siddy, I would appreciate you putting together the story and putting on the next post up if you would.  I don't have the reading "time" to look up all of everyone's post.  I doesn't have to be long, but I think people enjoy the conversational tone.  At least, that's what I tell myself when I'm long-winded.

Talk to you in the am .  Quix

[Siddy1]

Hello Quix - I think it is a great suggestion.  Anything I can do to help others will be a pleasure.  I have in my mind almost everything that I went through prior to diagnosis.  I always insisted on getting  copies of all my reports, my test results  and actual MRI's so I am able to go through them in my own time.  I asked lots of questions also. In retrospect I  have experienced many of (but not all) the symptoms that are posted by others on this board and when I read these posts I say to myself -  "oh yes, I experienced that" or "I know just how she/he feels".  I must admit some of my "lesser" symptoms just went by the board. I say "lesser" because they were far less important to me (thinking back) than having a dragging leg and a weak arm/hand -  but no less important for anyone else. In other words I had the symptoms but did not put two and two together.

If you want you can copy and paste any or all of my original posts into your page about the steps to my dx.  The steps  are the same whatever your age and given that I had a huge  relatively healthy gap in between "episodes" it may give hope to a lot of people.  I can't help wondering why the dx of secondary progressive with me, especially as they wanted me to take Rebif but I am assuming that if the "pseudo polio" incident was the first then the second took 44 years to really get here..

BTW you were wise to get that leg/foot checked out.  I had a DVT  behind my left knee in my "bad" leg BEFORE it was bad and it went scarlet and swelled up like a balloon with a deep pain in my  groin.  Went to ER and they checked me in for a week.  Was on Coumadin for nearly a year before it cleared.  I am sure it was not related to MS but  guess what I was doing for weeks before that??? Sitting at my computer for 5-6 hours at a time, without getting up and moving around.   Just asking for trouble.

Let me know what you want me to do, if anything and take care of yourself.

Siddy1  

[Want to feel well!!!]

FEEL BETTER SOON!!!!  Don't get too wrapped up helping all of us that you neglect yourself...and self-diagnose.  

Very good idea about the stories and what the journey was like for each individual.

Wanna