MY STORY

[Guest guest]

Good Evening to my MS family;

I have started to do this several times but I will start looking for the right email from Sharon to reply to and get sidetracted. This time I just quit looking and am winging it.

Sharon, I hope this is basicly what you meant by us telling our experiences.

I knew about 6 months before I got to the neuro what was wrong and it did not take all that long to get in to see him; maybe 3 weeks. I thought I was alright with everything but the year after the dx were so scary . Of course being scared also made things worse. If I didnot correct my direction my walking straight line was about 45 degrees off and very weavy. I had the sleeping problem. if I felt it coming on I would head for the chair or the bed and usually end up stretch out some where between. When I did not feel it coming I would just fall asleep where I was. Yes, even standing. it would be 15 minutes to 4 hours of sleep. I hurt all over. I had the drunken walk at all times. Just about the only thing I had any control over was my arms. and they would jerk once in a while. (Now my arms are almost as bad as my legs) I have just let go of things not knowing and for no reason. These are a few of the things that I remember right off.

So a little more than a year after dx I was laying on the floor and I started to visualize big birds (either large crows or eagles) swooping down and landing on my back and pecking the lesions out of my head and spine. I have never been told that I had lesions on my spine but that was part of the vision. This concept of visualizing was not new to me but was not something I did easily; but this time it just happened.

Within a few days I had improved a great deal. After that I would have an exacerbation about every two months and I would never get all the way back to where I was two months before. But it was gradual.

I do not really remember exactly when but shortly after the abcs came out the neuro put me on the betaseron. I had no problems giving myself the injections. I did have the side effects of the flu like symptoms and my injection sites were sore and red and itchy. To make a long story short I was making a pest out of my self by calling everyone and asking questions and advice. Then one day I quit taking the injections for 2 weeks. I felt good. I went back on the injections for two weeks and felt lousy so I quit all together About 6 months later I went to the neuro and he ask about the betaseron and if I thought it helped At this time I showed him my injection sites and he calmly said "It looks like you were allergic"

He has since memtioned starting this or that but by the end of the visit he has talked himself out of it or he just plain forgets. Which does not bother me at this time because I feel if he had seriously thought that it would help then he would have been more sure when he memtioned it.

If I am reading the little test he does the right way I have not changed a whole lot as far as being capable but I am here to tell you the pain has gotten a lot worse and it has spread to all parts of my body.

I have taken Tom's supplement list and studied on it and have modified it to me. I watch what I eat (All the way to my mouth) lol No really I have changed my eating habits . I have gotten better at blocking the pain and or getting above the pain. It stabs sometimes and it grabs but I cannot all it to run my life. I take time to allow my body to tell me what is happening and I talk to the pain and give it the rules. This is hard to do but for me it has to be.

THAT'S MY STORY AND I AM STICKING TO IT

LOVE AND HAPPINESS; FLOWERS AND BUTTERFLIESLYNN

[Guest guest]

ROFL Oh I just really enjoy this. LOL

Challis

Hello,I was gonna do my story but I keep forgettingeverything, so I guess I am gonna wait till I canremember what I have forgotten. If there is anythingI have forgotten, maybe I havent forgotten anythingand my real problem is that I THINK I have forgottenstuff. What was the question or was there a question? <--I was gonna have my smiley do a grin but Iforgot how to do that.

[Guest guest]

I just reread what I wrote last evening and I left a lot of things out but I am sure you all get the idea. It is not like I have to explain something in every minor detail right.

But I do want to stress that for the most part I feel great. Yes I hurt and yes I cannot do what I used to be able to but my general health except for the MS is as good or better than it was 20 years ago.

I also think my mental health has improved. And I give this Group a lot of credit for that.

I think one of the main things I have learnt is if your body is healthy then the MonSter cannot do as much damage.

Well I must go. So I am closing with a Big THANK YOU TO THE MEMBERS OF THE MSERSLIFE GROUP AND A BIGGER ONE TO SHARON FOR HAVING CREATED THIS GROUP!!!!!

FRIENDSHIP IS TRULY A RARE JEWEL TO BE TREASURED FOREVERMAKE EACH DAY A DAY TO REMEMBERLOVE AND HAPPINESS; BUTTERFLIES AND FLOWERSLYNN

MY STORY

Good Evening to my MS family;

I have started to do this several times but I will start looking for the right email from Sharon to reply to and get sidetracted. This time I just quit looking and am winging it.

Sharon, I hope this is basicly what you meant by us telling our experiences.

I knew about 6 months before I got to the neuro what was wrong and it did not take all that long to get in to see him; maybe 3 weeks. I thought I was alright with everything but the year after the dx were so scary . Of course being scared also made things worse. If I didnot correct my direction my walking straight line was about 45 degrees off and very weavy. I had the sleeping problem. if I felt it coming on I would head for the chair or the bed and usually end up stretch out some where between. When I did not feel it coming I would just fall asleep where I was. Yes, even standing. it would be 15 minutes to 4 hours of sleep. I hurt all over. I had the drunken walk at all times. Just about the only thing I had any control over was my arms. and they would jerk once in a while. (Now my arms are almost as bad as my legs) I have just let go of things not knowing and for no reason. These are a few of the things that I remember right off.

So a little more than a year after dx I was laying on the floor and I started to visualize big birds (either large crows or eagles) swooping down and landing on my back and pecking the lesions out of my head and spine. I have never been told that I had lesions on my spine but that was part of the vision. This concept of visualizing was not new to me but was not something I did easily; but this time it just happened.

Within a few days I had improved a great deal. After that I would have an exacerbation about every two months and I would never get all the way back to where I was two months before. But it was gradual.

I do not really remember exactly when but shortly after the abcs came out the neuro put me on the betaseron. I had no problems giving myself the injections. I did have the side effects of the flu like symptoms and my injection sites were sore and red and itchy. To make a long story short I was making a pest out of my self by calling everyone and asking questions and advice. Then one day I quit taking the injections for 2 weeks. I felt good. I went back on the injections for two weeks and felt lousy so I quit all together About 6 months later I went to the neuro and he ask about the betaseron and if I thought it helped At this time I showed him my injection sites and he calmly said "It looks like you were allergic"

He has since memtioned starting this or that but by the end of the visit he has talked himself out of it or he just plain forgets. Which does not bother me at this time because I feel if he had seriously thought that it would help then he would have been more sure when he memtioned it.

If I am reading the little test he does the right way I have not changed a whole lot as far as being capable but I am here to tell you the pain has gotten a lot worse and it has spread to all parts of my body.

I have taken Tom's supplement list and studied on it and have modified it to me. I watch what I eat (All the way to my mouth) lol No really I have changed my eating habits . I have gotten better at blocking the pain and or getting above the pain. It stabs sometimes and it grabs but I cannot all it to run my life. I take time to allow my body to tell me what is happening and I talk to the pain and give it the rules. This is hard to do but for me it has to be.

THAT'S MY STORY AND I AM STICKING TO IT

LOVE AND HAPPINESS; FLOWERS AND BUTTERFLIESLYNN

[Guest guest]

Welcome to the list. )

Not many of us have times and dates as you do! lol If you haven't already, write them down! LOL

You're right, we all do a lot of backtracking and wondering where our symptoms and signs first began. )

For me, sites such as these help in that process and just in the process of identifying what could be a symptom. I may be sending what you already have, but here ya go anyway. lol

http://www.mult-sclerosis.org/mssymptoms.html

http://www.geocities.com/thjuland/gloss.html

Spinal taps can give a false reading, though I don't know as much about this topic as I should. I understand where you are in attack can play a big role in that.

Oh! I almost didn't give my intro! LOL I'm currently seeking my dx. In fact, I see the Neuro tomorrow and hope the labs and MRI showed something. My Mother is an MSer and I think that helps. I know it will if I get my dx. She's also brought me to very knowledgeable and loving MSers who have been a tremendous help.

Hugs,

Challis

Hi everyone,Bear with me a moment and I'll tell you my story todate. On December 17th (I know the date because it wasa client's holiday party), I developed what I thoughtwas a viral and/or bacterial infection. Sinusinfection, I thought. Had 'em before. No biggie. Butthis one did seem to be centered behind my right eye,as well as hanging in my right ear and nasal passage. Called the doc for antibiotics. Got on 'em. The thingstarted to move into both sides of my head. OK, acold. Again, no biggie. By Christmas, I was feelingbetter. Then around December 28th, I went for a walk andthought, "Huh, my sunglasses are dirty." But no. Whatwas happening was optic neuritis in my right eye.Mild, but there. Diagnosed as such by anopthamologist. Got an MRI. It showed a lesion. Theysent me to a neurologist. Neurologist confirmed onelesion, possibly a "satellite lesion," aka, numbertwo, as well.Meanwhile, I did lots of research. Read thestatistics. Read about the Optic Neuritis TreatmentTrial (ONTT). Wanted to fight this thing. Myneurologist agreed. Last Friday, we raced to get me aspinal tap before I got on the steroids (whichapparently will screw up a spinal tap reading), andthen I went on three days of Solumedrol IV. That wasthis past Saturday through Monday.And now, here I am, waiting for the results. Feelingvery tired. Still trying to get some work done. Andwondering, which 50% will I be in? MS or not?On a related note--and I'm sure this will be familiarto many of you--I'm going back in my mind to anythingthat might be MS-related. Sure, I've had numbness.I've been a PC user for years. Assumed it was apinched nerve. So far, the steroids have helped, whichactually scares me a little. Bladder issues? Had afew. Stiff neck? Yeah, had that too. Who knows?My husband has had a chronic illness for years, so insome ways, he's a great resource and source ofcomfort. In some ways, he isn't, because it's so longago that he developed his thing, I think it's hard forhim to be in my place right now. Plus, we're differentin what we need for support. Call it a Mars/Venusthing. But don't get me wrong. He's a wonderful,wonderful man. And my family and friends have alsobeen terrific. I'm not shy about asking for supportand they've given me whatever they can.This is all so new, it's startling. How you can gofrom just living your life--being lucky, I'd call it,since I never really dealt with anything like thisbefore--to suddenly facing something serious. I'm noteven asking, why me? Just asking, why anyone?My thoughts go out to all of you on this site, inwhatever moment you're in along your journey. I havedeveloped a new level of respect for what many peoplehave to deal with every day just to live. People likeyou. People like me.

[Guest guest]

Hi Challis,

Thanks for those websites. I'll check them out.

I am keeping track of dates, etc. But of course, I wonder how accurate they will

be. I've had

periods of mild vertigo and numbness over the years and I wonder if that means I

was

having this before I really knew what was what. (Still not diagnosed yet,

though.)

Having a mom with MS must be an interesting experience. Not something I'm sure

either

of you would prefer to share but I'm sure there are aspects that bring you

closer and give

you a deeper understanding of each other.

I have not been able to tell my mother because her coping mechanisms come with a

big

downside (aka, stressing, worrying, stressing me) even though she's a wonderful

woman

with a big heart. I'm waiting until I have as many details as I can get. In the

meantime, I've

reached out to my father. He is the more rational and although not one to give

big bear

hugs and little " daddy will take care of everything " speeches, he's doing his

part. It's

interesting to see who can offer what to help, and what you can give in return.

I really don't look forward to telling my mom any of this. It's going to be the

hardest part.

She will not take it well. When I told her I thought I had a sinus infection

over the holidays,

she practically came apart. Maybe this will be part of her journey too, because

I know this

is one of her worst nightmares (potentially) coming true. I hope for the best,

though,

because I will need her to know.

The best to you and your mother. My thoughts are with you.

> Welcome to the list. )

>

> Not many of us have times and dates as you do! lol If you haven't already,

> write them down! LOL

>

> You're right, we all do a lot of backtracking and wondering where our

> symptoms and signs first began. )

>

> For me, sites such as these help in that process and just in the process of

> identifying what could be a symptom. I may be sending what you already have,

> but here ya go anyway. lol

>

> http://www.mult-sclerosis.org/mssymptoms.html

>

> http://www.geocities.com/thjuland/gloss.html

>

> Spinal taps can give a false reading, though I don't know as much about this

> topic as I should. I understand where you are in attack can play a big role

> in that.

>

> Oh! I almost didn't give my intro! LOL I'm currently seeking my dx. In

> fact, I see the Neuro tomorrow and hope the labs and MRI showed something. My

> Mother is an MSer and I think that helps. I know it will if I get my dx.

> She's also brought me to very knowledgeable and loving MSers who have been a

> tremendous help.

>

> Hugs,

> Challis

>

>

> In a message dated 1/27/2005 4:30:30 PM US Mountain Standard Time,

> yisabella7@y... writes:

> Hi everyone,

>

> Bear with me a moment and I'll tell you my story to

> date. On December 17th (I know the date because it was

> a client's holiday party), I developed what I thought

> was a viral and/or bacterial infection. Sinus

> infection, I thought. Had 'em before. No biggie. But

> this one did seem to be centered behind my right eye,

> as well as hanging in my right ear and nasal passage.

>

> Called the doc for antibiotics. Got on 'em. The thing

> started to move into both sides of my head. OK, a

> cold. Again, no biggie. By Christmas, I was feeling

> better.

>

> Then around December 28th, I went for a walk and

> thought, " Huh, my sunglasses are dirty. " But no. What

> was happening was optic neuritis in my right eye.

> Mild, but there. Diagnosed as such by an

> opthamologist. Got an MRI. It showed a lesion. They

> sent me to a neurologist. Neurologist confirmed one

> lesion, possibly a " satellite lesion, " aka, number

> two, as well.

>

> Meanwhile, I did lots of research. Read the

> statistics. Read about the Optic Neuritis Treatment

> Trial (ONTT). Wanted to fight this thing. My

> neurologist agreed. Last Friday, we raced to get me a

> spinal tap before I got on the steroids (which

> apparently will screw up a spinal tap reading), and

> then I went on three days of Solumedrol IV. That was

> this past Saturday through Monday.

>

> And now, here I am, waiting for the results. Feeling

> very tired. Still trying to get some work done. And

> wondering, which 50% will I be in? MS or not?

>

> On a related note--and I'm sure this will be familiar

> to many of you--I'm going back in my mind to anything

> that might be MS-related. Sure, I've had numbness.

> I've been a PC user for years. Assumed it was a

> pinched nerve. So far, the steroids have helped, which

> actually scares me a little. Bladder issues? Had a

> few. Stiff neck? Yeah, had that too. Who knows?

>

> My husband has had a chronic illness for years, so in

> some ways, he's a great resource and source of

> comfort. In some ways, he isn't, because it's so long

> ago that he developed his thing, I think it's hard for

> him to be in my place right now. Plus, we're different

> in what we need for support. Call it a Mars/Venus

> thing. But don't get me wrong. He's a wonderful,

> wonderful man. And my family and friends have also

> been terrific. I'm not shy about asking for support

> and they've given me whatever they can.

>

> This is all so new, it's startling. How you can go

> from just living your life--being lucky, I'd call it,

> since I never really dealt with anything like this

> before--to suddenly facing something serious. I'm not

> even asking, why me? Just asking, why anyone?

>

> My thoughts go out to all of you on this site, in

> whatever moment you're in along your journey. I have

> developed a new level of respect for what many people

> have to deal with every day just to live. People like

> you. People like me.