Just an introduction

[bettgo]

I have just joined this forum and I wanted to introduce myself to everyone.  I have had MS since 1981 when I was first DX when I was 30 years old.  I have three children (all grown) and 7 grandchildren.  They all live in other parts of the country.  I live in CA with my husband and our cat of 15 years and puppy of 7 months.  

I am very involved with my MS chapter. I am a support group leader, member of the Government Relations Committee, being an advocate for MS government bills, an MS Champion, a Top Fundraiser for the MS Walk.  I have had my ups and downs with MS over these many years.  Right now I am stable.  I do not have an active problem and haven't had for a couple of years.  I don't know why this has happened but it has.  I had been in a wheelchair/power chair for several years and then went back to a walker and then back to a cane and now can walk pretty much on my own without assistance.

I am always looking to support others and getting the support as well.  I look forward to exploring this site more and taking advantage of all that it can offer.  For those that are newly DX, keep talking.  You have the support and your answers are here.

[ShadowsSister]

Your story about your journey of living with MS sounds so much like mine, except I have never recovered. I have use a wheel chair since late (Oct) 1986. My Doctors told me after the first MRI that I was going to have a lot of problems, this was an understatement like no other. ( I was DX on Jan 29TH 1986 after a lot of test and one MRI)

Here I am 23 years later still dealing with more problems, but life does continue to move forward and adjustments continue to be made, but when you look at it, isn't this what everyone has to do, not just those of us who live with MS.

You were very Blessed your husband stood beside you and offered you the support he did. I lost not only those I thought were my friends but  "the Husband" too. After all these years I still have to work at Not getting upset because people still don't know how to deal with any one using a chair. It's so silly... I end up feeling sorry for them...

I went far too many years with out support. I was a peer counselor for The MSS, and enjoyed working with people. I also went to a group but was told I made people scared because I had only had MS for almost a year and was already in a wheel chair and had a trachea tube.  I was so tired of finding rejection at every turn that I decided I was going to be on my own and had better figure out how to make my life full and productive.

I did just that, I started seeing a Psychologist, I went for 8 years three times a week to learn who I was and how to remove stress asap out of my daily life.  and took some art classes, and photography classes and creative writing classes, by doing one class a term... I drove until 1995 when I decided I was no longer a "safe driver", Thank goodness for my electric chair, it gets me to my Dr. appointments, and around my neighbor hood.

the past four to five years have difficult, which is what lead me to look for a support group on line. One of my best decisions in a very long time

I am so happy that you have had this amount of recovery and am praying that it will last a long time for you.

You will find just like I have that this is the Greatest support Group Ever.  This group has become like part of my family, but even better because "They Get It", and they accept me any way...  ;-)

So Betty I hope you will stick around and let us get to know you &  you get to know us.
Again  I am so very happy for you and hope you continue to improve with each day that passes. Some times we need support to help us adjust to the good things as well as the bad things that go bump in the night. Just the knowledge that someone "Gets It", and believe me "we get it.

Hang in there Betty, we are all here for you... Sending you hugs on the winds{{{~!~}}}DJ

[green924]

Hi B J! Guess I'm kinda introducing myself and welcoming you to, too I'm really new to all this, knowing it was MS, and chatting on the comp. I have been dealing with so many health problems ever since my only son was born in 1999 to many to list and it has just progressed ever since then. To make matters worse I had a couple auto accidents, neither my fault, but 1 caused a burst fracture in my L3-L5. I was told I had possible MS in 2002 after an abnormal MRI, but the neuro at that time blames everthing on the accidents... I couldn"t get anyone to realize I had had alot of the problems prior to those.
Oh well, guess maybe I'll know more after my 1st Neuro appt. since being DX'd on Thurs.

Thanks again
Live, Laugh, Love
Melanie - 28, KY

[bettgo]

I will be glad to answer any questions you might have.  Right now I am on Avonex, Bacoflen (for spastic legs), Ditropan XL (for bladder), Amantadine (for fatigue), Wellbutin and Cymbalta for depression.  I also take a couple of other meds to help with headaches.

When I got worse, I had a neurologist that told me that she didn't know what to do.  I was in shock as I thought all neuro's new what to do with MS.  It was my first experience dealing with finding a new doctor.  She did offer another name to me who was a person that worked in the Neurology Department of UCI (University of California, Irvine) specializing in MS.  He took my case and scheduled a MRI to see what was going on.  

When I came to him, I was unable to walk very far before my legs gave out.  I would have great difficulty picking up my legs. I walked with great difficulty. This would happen after walking maybe three blocks or a short distance. I never knew when it would occur but when it did, it took all I had to get somewhere.

The new doctor had the MRI ordered and the result was not good.  There was an urgency from him to get me started on an IV Steroid done monthly.  At this time, I was also given an application for one of those handicapped placards.  I was given a prescription for a wheelchair and a power chair.  My husband bought a van, handicapped equipped, in order to transport the power chair.  

Things had progressed so fast that it took me some time to process it.  

He kept asking me why I had not been driving the van?  I guess he figured I would just jump right in and drive.  After all, I had what I needed.  The problem was me.  I had to use a power chair to get around by myself now. What happened?  I was embarrassed. No one seemed to talk to me. They talked over me! I didn't want to go out anywhere.  If my husband had functions to attend, we would take the wheelchair.  I still had the same issues.  I was ignored.  It was miserable.  

I did get into a good local support group that would meet twice a month.  It helped me a lot.  I because stronger mentally.  I learned that having MS was not the end of the world, even though it had felt that way.  It had to do a lot with your attitude.  I wasn't going to take this lying down.

Betty

[sllowe]

Hi **,

Thank you so much for joining us and for your encouraging words to our members! We are particularly proud of the community we have here (yea, I'm biased toward us ha/ha) - as you noticed not all are dx'd but many still searching best they can.

Very glad to have you and look forward to your participation, lending your knowledge and experiences with us.

Would like to know more if you feel like sharing, i.e., what (or if) on DMDs, how you were feeling when you had to go to the power chair, etc.

And, a big congratulations on getting back your mobility!

Thanks again,
-Shell

[Lulu54]

Sorry the censor is going to bleep your name everytime those initials are used .... they are pretty strict around here about terms that may have se x ual connotations.  Drop me a note if you need further explanation.

everyone else, just put a space between the b and the j and you should be ok.! :-)

Lulu

[Lulu54]

Hi ** and welcome! We are always happy to see new faces and names pop up here, and I especially love the experience some of you bring to our community.

I hope you will pop through often and continue to share with all of us your own personal journey with this MiSerable disease.

my best,
Lulu

[meg321]

Hi, welcome to the forum, we can use all the help we can get here.. I was diagnosed on April 4 of this year and very busy trying ti do everything I can to at least feel better and it seems to be working....I started copaxone May.

hugs, meg...also in California !

[HVAC]

Welcome. We can use someone with your experience in dealing with MS.

I was diagnosed in April with RRMS after two years of tests. I am also active as an advocate especially with health care reform.

I am one of the lucky ones. I still can do most things although it is not quite as easy as it  once was. I walked my dog for several miles today but my legs felt weird for the last half hour.

I have three dogs, two are dalmatians. I also have two cats, brothers.

Glad you are aboard,

Alex

[Wobbly]

Welcome to our forum family, glad you could join us.  That is so great that you are now able to walk on your own without too much assistance.  I myself have just got my Dx, I've been in limboland for approx 4 years... getting worse slowly through those years.  

I'm Dx with PPMS, still able to walk with a cane or walker.  Looking forward to hearing from your experience.  

take care and talk soon
wobbly
dx