I'm new to this group!

Hello everyone,
This is my intro to all of you. I just saw Heather's "regroup" message so I'll start with that:
MSedUp - Barbara - diagnosed March 16, 2006 - age 57 - MS

So, from that you can see that I was just dx'd almost 2 yrs ago, not long after my 55th bday and it came as a total shock!!! I had hurt my left knee and was in a short knee brace from July to Oct. When I finally saw my own doc, Oct 31st, he did a re-evaluation and an x-ray and said he didn't think I had been correctly taken care of and sent me to an ortho-pedic surgeon. When I saw him, I was told that I had damaged my MCL and he put me in a full-length leg brace and ordered me to stay off my leg 100%, for 3 wks - had to use crutches to go to the bathroom. That was Nov 14th and the day all my crazies started that led to the MS diagnosis!!

The first thing was just tinglies in my toes, both feet. By the time I was sent to a neurologist, in Feb/06, those tinglies went to stiff weird things happening in my lower legs, up to my knees and then the pain started!!! Extreme pain in both legs at the same time and to the same areas. When that pain reached mid-thigh, my PT nurse (for the knee injury) said I needed to see someone FAST! We were all thinking it must be a pinched nerve in my back somewhere.

The pain from mid-thigh slowly continued up my body until it reached just below my bra, and then the banding started (what I now know it is called) and my doc sent me to the neurologist. I had an EEG, SSEP, VEP, and MRIs done. Got home and found out that I have MS. I saw an MS neurologist on May 1st and he diagnosed me with PPMS - Primary Progressive MS. He said I'd be in a wheelchair within 2 yrs. ONLY five months later, I was in a wheelchair. My doctors were surprised at how fast the speed of my MS progression was!

The symptoms of MS that I sat down and listed, in hindsight, with the help of family and friends, was the bladder & bowel incontinence problem - not having any of the medications help at all; a weird dropsy or "tossing" thing with my right hand - it has a mind of its own and I lose control of it often; my memory loss seemed to be more extreme than girlfriends of the same age; occasional swallowing problems; walking to the right and bumping into things and people - did without noticing, as I thought I was travelling in a straight line; ; vertigo; and the all-too-often "wixing up of my mords".

Not completely disabled, I am able to get about my home without the use of the wh/ch. Everytime I leave home to shop, I must be in my wh/ch but when I have to go to doctors, I usually can prepare myself the day before, by walking around less often so that a short walk into an office, doesn't start incredible burning pain in my legs. I can't stand at a counter, or in a line-up, without incredible pain starting in my legs, so I use a perching stool. I also have a bath stool for my showers. We bought an ergonomic chair for my computer use and found that I could use it when I sit at the table or in the living room, socializing. I have a foot stool that I use with that chair to have my feet elevated, on an angle. I can't sit on a couch or any other chair for very long without bringing the pain on.

Because I can't take any medications to slow the progression down, I am on tons of meds to help with my symptoms. Those are pain, spasticity, incontinence, vertigo or loss of balance & a proneness to depression. I also have to get up during the night, for about 45 mins, to keep my body from "freezing" up. If I don't take this sleep break during the night, I can hardly move in the mornings.

This past 6mos, I've been doing much better around home. I can walk around for longer distances and for more mins, than I could before that. I seldom have to use my wh/ch at home except in highly stressed times or when I've overdone it!! Something that is difficult for me NOT to do.

I was a very physically active person prior to all of this. I always had more things on the go than most people and got teased alot by family and friends for being so "busy" all the time. This MS certainly took that lifestyle away from me!!

The biggest worry I have today is about my cognitive stuff!! I can't believe how quickly I am "losing my mind", literally. It's not just the memory losses we all have, but my inability to answer some questions, quickly or, at times,  just to do things as I normally used to do, without having to carefully think through whatever it is I am doing. All this stuff makes me think of a mild case of Alzheimer’s.How scary!!

Well, I look forward to being a part of this community. I sure hope I can get back at least once a week, if not more. Glad you are here! Hugs, Barbara (MSedUp)

[MSedUp]

So, new friends, this is my intro and I sure hope it isn't too lengthy. I hope my explanation of things helps someone who is wondering about things that are happening to them - perhaps some who are not sure if they have MS or not.

THIS should be before "Well, I look forward..." Hugs, Barbara

[Rena705]

Well, I would like to Welcome you to our forum and I would also like to say that I am sorry for all the pain and suffering you have endured on the path to a diagnosis such as PPMS.  

There is a great group of people here that work together as a team and I think that you will be a GREAT addition to that team.  As you stated in your post, you can explain some of the symptoms that you have had or are having now and how you are dealing with them and that is very important to our members.

There are quite a few members here that have been diagnosed with MS including a retired pediatrician named Quix who is a wonderful help to everyone with the knowledge she has attained over the years as a physician.

There are also quite a few members here that are in what we call "limbo-land"...the space between being sick, having symptoms and having NO diagnosis.  This is a very frustrating place to be and the support that is garnered from this site is crucial to some of the members being able to continue to function while looking for the help they need.

We are here not to diagnose people of any illnesses but we are able to offer suggestions that members may use to further be advocates for themselves in their own healthcare.  Here in the new millenium, we believe that being pro-active is very important as it is very easy to fall through the cracks and get lost in the shuffle...however, sometimes being pro-active when you are ill is a VERY difficult thing to do so that is where the support on this Forum is SO IMPORTANT.

Again, Barbara, welcome to our Forum and I, myself am really looking foward to getting to know you better as is, I am sure, the rest of the members.  I have been diagnosed with MS and I have had several "professional" opinions as to whether or not I have had a few relapses.  I am currently trying to get my neuro to give me the disease modifying drugs that I am entitled to but she is denying me.  

We all have a new story...sometimes daily and should you need to come to us to rant, rave, laugh, cry or just have a shoulder to lean on, we are here 24/7 and as a member, I have a feeling that you will be here for the others as well!  Thank you.

Lots of Hugs,

Rena705

[Rena705]

Hey girl...just noticed that you are from BC...I am next door in Alberta...hi neighbor!  Nice to have a fellow Canadian on the forum, we do have different lingo than the U.S. i.e. G.P.=P.C.P.

Rena705

[Momzilla]

Hi, Barbara, and welcome!

I am sorry you have had such a tough go of it.  WOW.

I am at work, so I must keep it short and sweet for now, but I wanted to let you know that I, too, have suffered cognitive difficulties.  They just suck, plain and simple.  Pardon my French.  I had trouble remembering whole conversations, my newest phone number (but not the one from 5 years ago), the name of the doctor I work for....  It was terribly frustrating.  My concentration was also poor, as well as my typing skills (which have never been great to begin with, thank you very much!)

My neurologist (who thinks I had a brain infection long ago) asked me to try Omega 3 Fish Oil.  I did.  I take 1200 mg per day, a little over the recommended 1000, but, hey, it was on sale!  And I'm from the US.  We always think that if a little is good, MORE is BETTER!  We're awful that way.....

Anyway, my neuro swears that the fish oil helps with cognitive difficulties.  I do feel better, but I think I was starting to anyway.  I won't ever stop taking it unless I start to grow gills, though.  I feel strongly about taking it.  My neuro convinced me.  He does a lot of research, and feels strongly about it and other minerals, like selenium.  I eat a handful of Brazil nuts each day, too!  

I hope it gives you a little hope.  But PLEASE be sure to talk to your doctor about your concerns.  That's what he/she is there for!!!!

Keep us posted and stick around.  Feel better!

Momzilla*

[Sonaya]

Hello and thank you

For sharing your story.  As a fellow limbolander- person who thought might have had ms, still having tests, undiagnosed, possible diagnosed of this or that.  It is appreciated that you shared your story here with us all.

[sllowe]

Hi Barbara,

Welcome to the forum!  I'm so glad you've found us.

We sure look forward to getting to know you, and even though you've not been diagnosed for too long, I sense you'll have a lot to teach us.

This is the the best support and educational network one could hope for.

be well,
SL

[Quixotic1]

Wow, what a story and a shock to the life you thought you had!  I am so glad you joined us and even more glad that you are currently in a more stabilized part of the disease.

I am too tired tonight, but we have had a couple discussions on things that have helped some of us with the cognitive stuff.  Doesn't it suc k to remember when you could think quickly and accurately?  I'll toss out some of the ideas tomorrow.

Welocme again....welcome agian ..........ohhhhh, glad you're here!

Quix