Re: Doctors aren't sure. Does this sound right?

[Guest guest]

: Does this sound like MS to anyone who has it? I just found this

site this AM, & checked a few of the links. I've seen Web MD too. I

guess whatever this is, it could be just about any of the

The problem is MS sounds like so many other things. You have had so much ruled out already I would start looking at where that leaves you.

Yes, the symptoms sound like MS but also sound like they could be a spinal injury or back injury. Have you had a MRI of your spine or head?

how they done evoke potentials on you? I am wondering why your doctor thinks might be years before a DIGNOSIS when you have already had MULTIPLE (the multiple from multiple sclerosis) episodes?

Please let me know about the MRI'S of the brain and spine, if u have not had them that would be the next steps.

Do u have any visual problems? Are u worse in the heat? any electric sensations? Any cognitive issues?

Welcome aboard! Although it is always nicer to meet under better circumstance, u never know a blessing sometimes until a time has passed.

Gwen

[Guest guest]

It costs $800-$1200 per month, but her insurance picks up

most of it. That's part of my

These are injectable drugs that we fondly? Call the ABC drugs. avonex. Beta interferon and copaxone, copaxone is the only one that is not an interferon.

The all have to be injected. Yes, they are expensive also. although you can get help from the company that sells them and not every one has to or wants to take them.

Your friend may have remitting relapsing MS, there are different kinds of MS, I have secondary progressive.

With reemitting relapsing you have an episode of MS symptoms and then get better for a time and go into remission.

Carol has the worse kind of MS primary progressive, that is when you get MS and it does not get better, but as u see carol and I have both gotten better with our diet change.

i know it is all confusing, please ask any ?/s u may have

Gwen

[Guest guest]

milk

from my diet.

see notmilk.com

[Guest guest]

I drink about a quart of 2% milk per day. I just love milk. Is this a

bad idea? Some of what I've seen today would indicate that would be

the case.

Steve visit the web site notmilk.com and look up multiple sclerosis I too was an avid dairy person. I went cold turkey and with in two weeks I felt better.

other things changed too, no more allergies or sinus problems.

The difference is amazing!

Gwen

[Guest guest]

The all have to be injected. Yes, they are expensive also. although you can get help from the company that sells them and not every one has to or wants to take them.

Your friend may have remitting relapsing MS, there are different kinds of MS, I have secondary progressive.

Gwen is correct about the ABCs.

Copaxone is the only one of the ABCs that has shown to improve symptoms, of the three. And that has only been in very few cases and after using it for at least 5-6 years. I am on Copaxone, as well as doing my diet. But, I have only been taking it for less than 3 years, so I know my improvement is from my diet, not the Copaxone. I take the Copaxone as a little bit of extra 'insurance' for later on. It's the only one of the three that I would ever consider taking, since it is essentially just 4 amino acids.

Carol

[Guest guest]

> Hello,

>

> Thanks in advance for any information you can provide. Sorry this

is

> going to be a little long, but this has gone on for more than a

year.

> I'm praying that someone who reads this can offer up an idea.

>

> The doctors haven't yet confirmed what I have, which might be good.

> From what my Neurologist has told me, it may take a couple more

years

> to confirm what I have.

Greetings Steve,

Multiple Sclerosis is a term and a diagnosis that simply put

describes a group of symptoms. These symptoms may or may not be

different for different people. The direct translation is Multiple

Scarring, usually referring to the plaques (scar tissue) in the

Central Nervous System. So stating emphatically that you have MS may

be difficult for any doctor as this scarring may be caused by any

number of stresses on your immune system.

This is a very confusing and frustrating condition to live with,

but there are ways to minimize the symptoms, and in my opinion remove

the stress or stresses that are causing the imbalance in the immune

system and thus be symptom free or " cured " . The Western MD's will

argue this point, and offer all types of " Scientific " evidence to

support their position. It is in their financial interest to do so.

It is my suggestion that you investigate and learn as much as you can

about the function of the immune system, keep track of what you do

that may increase symptoms, and conversely what reduces the symptoms,

learn about what some of the folks in this group do to control their

symptoms, and open your mind to any possibility until you have found

it does not work for you or does.

As far as being a father is concerned, this has not changed.

You still are a father. Use your desire to play with your child as

the inspiration necessary to engage in this battle for health. There

will be bumps along the way; fore warned is fore armed, as it were.

There is always someone in this group that can respond to any

question that you may have, even if it is only a suggestion as to

where to look for the information, and offer support during a

difficult time.

My best thoughts are with you and your family as you journey

along your path.

Peace,

Ed

[Guest guest]

It is my suggestion that you investigate and learn as much as you can about the function of the immune system, keep track of what you do that may increase symptoms, and conversely what reduces the symptoms, learn about what some of the folks in this group do to control their symptoms, and open your mind to any possibility until you have found it does not work for you or does.

Not to argue your point here, Ed, but I think studying the immune system would be like studying pain, instead of what's causing the pain. There are probably many things that can cause the immune system to go 'berzerk' as our's seem to have done. The trick is to find which one is the problem in our own case. For instance leaky gut can set the stage for the immune system to over react, when it's trying to 'attack' the 'foreign' food particles that enter the blood stream. Carol

[Guest guest]

There is clearly a lot to go over with respect to diet, more than I've had the time for so far. But it would probably make sense to start here unless symptoms worsen?

Steve,

I think the Best Bet Diet will be your best bet, whether or not the symptoms worsen. My symptoms worsened for 4 years while I was on the Swank diet and then the Best Bet Diet, but finally they improved. Diet takes a while to start working. I think it took 4 years for me, because I'm primary progressive and because I didn't have the diet refined for so long. Most people notice at least minor improvements within a couple of months.

Carol

[Guest guest]

Carol,

I'm going to try it. I looked it over last night for a while. Removing milk products from a diet like mine will take some doing. Do you guys that have done this take vitamin D & Calcium supplements?

Thank you,

Steve

Steve,

Boy, do I know what you mean about the dairy products. My Dad was half Danish and half German and I was raised on them. We always had milk, cream, all sorts of cheeses, butter and dish after dish that included dairy. I love them, and miss them most of all on the diet. (Well, them and sugar and chocolate. LOL.)

I take most all the supplements that are listed on the web sites I sent you. But, I do not take calcium. I take magnesium, but not calcium. That's a long story, but I'll try to make it short. I was taking the usual twice the amount of calcium as magnesium for many years before MS. Then I found out, through testing, that my calcium levels were dangerously high and magnesium levels dangerously low. The doctor gave me magnesium injections for weeks and told me not to take any calcium. It all leveled out, but now, if I try to take calcium, my muscle spasms increase. If I don't take enough magnesium, they increase too. Calcium is responsible for muscle contractions and magnesium is for muscle relaxing, so it makes sense. I have read, and I believe it's true from my experience, that you should NEVER take more calcium than magnesium, and magnsium has been very under rated and unstudied. Your body can make calcium out of magnesium, but it cannot make magnesium out of calcium. Without magnesium, the calcium will predominantly just stay in your blood and not get into the cells and bones etc.

Here is a very good link on magnesium. It's huge with thousands of articles about magnesium.......this is a critcal mineral.

Carol

MAGNESIUM-DEFICIENCY CATASTROPHE

[Guest guest]

Can a broken wisdom toothe allow food particles to enter the blood stream? Would this cause any of the effects discussed? I have what seems to be an unusually high pain threshold level. So I pulled a busted wisdom toothe out myself & am wondering if that wasn't a really dumb thing to do especially with what I'm seeing here.

Steve,

I doubt it. We don't absorb food through any cuts on the body. The only thing I could see possibly wrong with pulling your own tooth, could be that it isn't cleaned out well enough, but that is done every day by regular dentists. It takes a holistic dentist to know the importance of cleaning out the extraction site deeply. I would think you're probably ok on that, especially if it's not bothering you.

Carol

[Guest guest]

Hello,

Thanks in advance for any information you can provide. Sorry this is

going to be a little long, but this has gone on for more than a year.

I'm praying that someone who reads this can offer up an idea.

The doctors haven't yet confirmed what I have, which might be good.

From what my Neurologist has told me, it may take a couple more years

to confirm what I have.

Greetings Steve,

Multiple Sclerosis is a term and a diagnosis that simply put

describes a group of symptoms. These symptoms may or may not be

different for different people. The direct translation is Multiple

Scarring, usually referring to the plaques (scar tissue) in the

Central Nervous System. So stating emphatically that you have MS may

be difficult for any doctor as this scarring may be caused by any

number of stresses on your immune system.

This is a very confusing and frustrating condition to live with, but

there are ways to minimize the symptoms, and in my opinion remove the

stress or stresses that are causing the imbalance in the immune system

and thus be symptom free or " cured " . The Western MD's will argue this

point, and offer all types of " Scientific " evidence to support their

position. It is in their financial interest to do so.

It is my suggestion that you investigate and learn as much as you can

about the function of the immune system, keep track of what you do

that may increase symptoms, and conversely what reduces the symptoms,

learn about what some of the folks in this group do to control their

symptoms, and open your mind to any possibility until you have found

it does not work for you or does.

As far as being a father is concerned, this has not changed.

You still are a father. Use your desire to play with your child as

the inspiration necessary to engage in this battle for health.

There will be bumps along the way; fore warned is fore armed, as it

were.

There is always someone in this group that can respond to any question

that you may have, even if it is only a suggestion as to where to look

for the information, and offer support during a difficult time.

My best thoughts are with you and your family as you journey along

your path.

Peace, Ed

________________________________________________________________

Wow,

First, thanks to you all! It is nice to know that there are caring

people to share these things with. I hope you all don't mind the

chance to discuss this. My family is what drives me through all

things, but I don't like to burden them with this issue. My wife gets

nervous with this sort of talk. I don't blame her.

To answer a few of the questions.

MRI taken one time only so far. Some scarring. Head only.

Spinal Tap indicated some sort of antibodies that could not rule out

MS. Dr.s said could be the result of other infection but no indication

as to what.

Yes to " evoke potential " : results were normal. This was the last test

administered. Dr. has since given me the option of looking at the

various forms of prescription treatment. I've declined this offer to

date since the symtoms all but disapperared over this past summer.

Visual problems? I have very poor eyesight to begin with & wear

contacts nearly all day. But no apparent additional loss of vision

since this began. I do have " floaters " . What are the visual symptoms?

" electrical sensations " - Skin crawl along back sometimes when

flexxing neck muscles. Occasional toe nerve response for no apparent

reason. A " clicking " is how I'd describe it. Interestingly, I nearly

killed myself by electrocution in my garage with an Arc Welder 2 weeks

prior to the onslaught of symptoms and really thought that it had been

the cause. (I even got hit by lightning once.) The doctors don't think

there is a connection, though I can't help but wonder.

Heat? While extreme heat & I have never gotten along, my symptoms are

worse when it's cold. My right hand is sometimes so bad in the cold, I

can't get my gloves back on if I have removed them outdoors. While

sledding with my son last night, I had to remove both gloves to help

the boy. Getting them back on was amusing. If I can't laugh at this

once in a while, it may get the best of me. And I won't tolerate that.

There is clearly a lot to go over with respect to diet, more than I've

had the time for so far. But it would probably make sense to start

here unless symptoms worsen?

Thanks again. I'm in awe of the generous support & inspiation you all

provide.

Sincerely,

Steve

[Guest guest]

Carol,

I'm going to try it. I looked it over last night for a while. Removing

milk products from a diet like mine will take some doing. Do you guys

that have done this take vitamin D & Calcium supplements?

Thank you,

Steve

> In a message dated 1/8/02 6:15:25 AM Pacific Standard Time,

sls247@l...

> writes:

>

>

> > There is clearly a lot to go over with respect to diet, more than

I've

> > had the time for so far. But it would probably make sense to start

> > here unless symptoms worsen?

> >

>

> Steve,

> I think the Best Bet Diet will be your best bet, whether or not the

symptoms

> worsen. My symptoms worsened for 4 years while I was on the Swank

diet and

> then the Best Bet Diet, but finally they improved. Diet takes a

while to

> start working. I think it took 4 years for me, because I'm primary

> progressive and because I didn't have the diet refined for so long.

Most

> people notice at least minor improvements within a couple of months.

> Carol

[Guest guest]

Can a broken wisdom toothe allow food particles to enter the blood

stream? Would this cause any of the effects discussed? I have what

seems to be an unusually high pain threshold level. So I pulled a

busted wisdom toothe out myself & am wondering if that wasn't a really

dumb thing to do especially with what I'm seeing here.

> In a message dated 1/8/02 3:37:29 AM Pacific Standard Time,

> ejsant@o... writes:

>

>

> > It is my suggestion that you investigate and learn as much as you

can

> > about the function of the immune system, keep track of what you do

> > that may increase symptoms, and conversely what reduces the

symptoms,

> > learn about what some of the folks in this group do to control

their

> > symptoms, and open your mind to any possibility until you have

found

> > it does not work for you or does.

> >

>

> Not to argue your point here, Ed, but I think studying the immune

system

> would be like studying pain, instead of what's causing the pain.

There are

> probably many things that can cause the immune system to go

'berzerk' as

> our's seem to have done. The trick is to find which one is the

problem in

> our own case. For instance leaky gut can set the stage for the

immune system

> to over react, when it's trying to 'attack' the 'foreign' food

particles that

> enter the blood stream.

> Carol

[Guest guest]

Not to argue your point here, Ed, but I think studying the immune

system would be like studying pain, instead of what's causing the

pain. There are probably many things that can cause the immune

system to go 'berzerk' as our's seem to have done. The trick is to

find which one is the problem in our own case. For instance leaky

gut can set the stage for the immune system to over react, when it's

trying to 'attack' the 'foreign' food particles that enter the blood

stream.

Carol

Hi Carol,

Well I think if you or I look back, the first thing we learned

about was our immune system. No doubt the critical point is to find

out what stress or stresses have caused the imbalance and remove it

or them.

Hi Steve,

I seriously doubt that food particles have gotten into your

blood through your tooth. It's possible that the emotional stress of

all this has caused your symptoms (ie; fatigue, hand control) to

present. Carol has offered sound advice. I can not agree more that

diet is of primary importance.

I have followed the route of general detox, then specific issues

that were uncovered as a result of Applied Kinesiology. That's the

testing of muscle strength when certain meridan points are touched,

or certain esscences are used.

It's an up and down road as just about anyone of us can tell

you, the trick is to minimize the down thereby maximizing the up.

This requires dedication and disipline, your reaching this sight

shows to me your determination.

It is my suggestion that you understand as much as you can about

any treatment protocol you are about to undertake. I believe that

you will know when you are on the right path, you'll feel the

dfference. Just don't give up on the diet, you really do not need to

introduce any other stresses to your system.

Peace,

Ed

[Guest guest]

Ed wrote:

> As far as being a father is concerned, this has not changed.

>You still are a father. Use your desire to play with your child as

>the inspiration necessary to engage in this battle for health. There

>will be bumps along the way; fore warned is fore armed, as it were.

> There is always someone in this group that can respond to any

>question that you may have, even if it is only a suggestion as to

>where to look for the information, and offer support during a

>difficult time.

> My best thoughts are with you and your family as you journey

>along your path.

>Peace,

>Ed

Dear Ed;

You write so beautifully! Your thoughts on parenthood are inspirational. I

had a lot of stress this year over taking my three younger children skiing

over christmas. This is an annual tradition of ours, and this is the first

year that I have been unable to ski. My seven year old exclaimed " Mom...

when are you going to get rid of that M.S.? I don't like it! "

I ended up hiring an able bodied person to watch my kids on the runs, and I

sat in the lodge and waited for them. All I kept thinking about was if I had

known that last year would be my last time skiing, I would have played

hookie from my life, and skiid every day last winter!

I am going to go back up with my kids in March. The ski hill has a new area

for tubing with a rope tow, where you sit in the tube, hold onto the rope

and it pulls you up the hill. I don't know if I'll have enough upper body

strength to do this or not, but that's my goal right now.

I have definately found that dealing with my own adjustments and

frustrations with my symptoms along with quelling the fears and

dissapointments of my kids very challenging. Ontop of everything else, my

kids have had this huge change in the food available in my kitchen as well!

I still steam veggies and cook rice for them, but they do get dehydrated

sprouted falafal balls and raw pizza in their lunch boxes! They compalin

like crazy! No more kit kat chocolate bars and chocolate milk.

Parenting is challenging at the best of times. It is something that I spend

a lot of time thinking about... how to talk with my kids about what is going

on without frightening them, and allow them to adjust along with me to the

reality of having physical limitations. Hardest thing I've ever done.

Regards;

Les

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Parenting is challenging at the best of times. It is something that I

spend

a lot of time thinking about... how to talk with my kids about what

is going

on without frightening them, and allow them to adjust along with me

to the

reality of having physical limitations. Hardest thing I've ever done.

Hi ,

If I have offered any inspiration to you then I have found my

reason for yesterday, Thank you.

Parenting is difficult even with out having MS. I am having a

very difficult time with my 11 (almost 12) year old son. His Mom and

I are divorced for quite some time. Aside from the regular issues

that an 11 year old faces, he has to deal with the fact that I can't

just go and play baseball, or run around as much as I used to be able

to. This seems to have made him very angry, although like his Dad he

won't talk about it. It's been about four weeks since I have seen

him. It seems better that he doesn't spend weekends with me at this

time as there really has not been allot that I have been able to do

of late. I'm sure that as I rally more I will be able to return to

the activities that we used to share together. This is one of the

bumps that I referred to. I also have three daughters, ages 15,17

and 22 from my first marraige. My two teenage daughters seem to be

doing fine, although I really do not see them much as they are

involved in their life, school, and UGGG! boys, as most teenager

girls are. We talk on the phone and keep up with one another through

email. My 22 year old has been on her own since she was 18 and doing

fine, we see each other all the time.

For as long as my head is clear I will continue to try to teach

all of them about what I have learned in life in hopes of some of it

finding it's way into their values. I believe that I can continue to

do this regardless of whether I can walk or not.

Two years ago when I couldn't walk I fought with the Doctors and

Nurses in the Hospital constantly. They kept telling me to stop

dragging myself around the ward floor, that I needed to lay in bed

and rest. I didn't understand this as I told them I was able to lay

in bed and rest, what I wasn't able to do was walk. I said to them

that it seemed to me that I didn't have to practice what I already

could do (lay in bed and rest), I had to practice what I couldn't do

and that was walk.

My point to all of this is that we really can accomplish our

goal, albeit it with our children or personal, all we have to do is

find the way that works for each of us. I'm sure that you will enjoy

the winter activities on a slope with your children again. It may

not be skiing the Back Bowls of Utah, but hell bouncing around on an

innertube sounds like a blast. By the way I can't think of any young

person that wouldn't rather have a Big Mac, Fries, Coke, and a Candy

Bar over steamed brocolli. I'm not sure this is limited to young

people.

I don't view having MS as being a change in my path, just a

different event on it. Journey well, be happy, and stay inspired as

this will inspire others.

Peace,

Ed

[Guest guest]

Hi All,

I've looked here for support & inspiration & I get it. Perhaps my

feelings on the child rearing subject can help some of you.

Whatever we have to tell our children, good news or bad, it is HOW we

communicate with them that sets the tempo for interpretation. Not what

we have to say, but how. When we are stressed, they hear it. When

we're elated, they hear that too. No matter the message. If we sound

remorseful or scared, they will be too. It is very easy to say too

much to a child who is confused or scared, sometimes adults do this

without uttering a word.

On 9-11 there were small children crying at my sons' preschool when I

arrived to pick him up. There were teachers acting nervously & wiping

tears from their eyes. I could not see why the kids were exposed to

the news since the school is 40 miles from Manhattan. I was annoyed to

say the least. On the way out to my truck, my son shared with me the

details as he knew them. Instead of getting emotional about the

subject, I allowed him to explain it to me, then reinforced his

intelligence with positive praise.

The small details the kids picked up on were from the adults around

them. There are no TV's or radios in the classes. None of my sons

school mates were crying, yet somehow they all seemed to know. His

teacher doesn't get flustered. EVER. I almost never get flustered

either. But since some of the other teachers were crying, the kids

around them did too.

Once home, we watched about 5 minutes of the incident, then shut off

the TV. My son indicated that a lot of people must have been hurt or

killed & that their families would be scared. I agreed. We decided

that God & Jesus would be busy meeting the souls of the victims. We

prayed for their peace & comfort.

On several occasions thereafter, has exhibitted much greater

compassion & understanding toward those we know who were greiving than

any of the adults around them. He expressed his sympathy, then

reassured them by explaining that we had prayed for all the families &

they needn't be scared anymore. That Jesus had helped & the victims

were now OK & with him. He was quick, to the point, & quite sincere.

Then just as quick as you'd expect, he's off onto a lighter subject

that has captured his attention. And a surprised adult was permanantly

& positively affected.

Pretty neat stuff coming from a 5 year old.

I couldn't see hiding it from him nor dwelling on it either, When it

needed to be discussed it was. Without undue remorse & absolutely

without fear. Since he knows that with Jesus, there is no need for

fear.

I know that everyone is not a Christian. But all faiths lend comfort

when calm adults explain these things in a simple & rational way,

spending more time listening than speaking.

Hope this helps,

Steve

>

> Parenting is challenging at the best of times. It is something that

I

> spend

> a lot of time thinking about... how to talk with my kids about what

> is going

> on without frightening them, and allow them to adjust along with me

> to the

> reality of having physical limitations. Hardest thing I've ever

done.

>

> Hi ,

> If I have offered any inspiration to you then I have found my

> reason for yesterday, Thank you.

> Parenting is difficult even with out having MS. I am having a

> very difficult time with my 11 (almost 12) year old son. His Mom

and

> I are divorced for quite some time. Aside from the regular issues

> that an 11 year old faces, he has to deal with the fact that I can't

> just go and play baseball, or run around as much as I used to be

able

> to. This seems to have made him very angry, although like his Dad

he

> won't talk about it. It's been about four weeks since I have seen

> him. It seems better that he doesn't spend weekends with me at this

> time as there really has not been allot that I have been able to do

> of late. I'm sure that as I rally more I will be able to return to

> the activities that we used to share together. This is one of the

> bumps that I referred to. I also have three daughters, ages 15,17

> and 22 from my first marraige. My two teenage daughters seem to be

> doing fine, although I really do not see them much as they are

> involved in their life, school, and UGGG! boys, as most teenager

> girls are. We talk on the phone and keep up with one another

through

> email. My 22 year old has been on her own since she was 18 and

doing

> fine, we see each other all the time.

> For as long as my head is clear I will continue to try to teach

> all of them about what I have learned in life in hopes of some of it

> finding it's way into their values. I believe that I can continue

to

> do this regardless of whether I can walk or not.

> Two years ago when I couldn't walk I fought with the Doctors

and

> Nurses in the Hospital constantly. They kept telling me to stop

> dragging myself around the ward floor, that I needed to lay in bed

> and rest. I didn't understand this as I told them I was able to lay

> in bed and rest, what I wasn't able to do was walk. I said to them

> that it seemed to me that I didn't have to practice what I already

> could do (lay in bed and rest), I had to practice what I couldn't do

> and that was walk.

> My point to all of this is that we really can accomplish our

> goal, albeit it with our children or personal, all we have to do is

> find the way that works for each of us. I'm sure that you will

enjoy

> the winter activities on a slope with your children again. It may

> not be skiing the Back Bowls of Utah, but hell bouncing around on an

> innertube sounds like a blast. By the way I can't think of any

young

> person that wouldn't rather have a Big Mac, Fries, Coke, and a Candy

> Bar over steamed brocolli. I'm not sure this is limited to young

> people.

> I don't view having MS as being a change in my path, just a

> different event on it. Journey well, be happy, and stay inspired as

> this will inspire others.

> Peace,

> Ed

[Guest guest]

Do you guys

that have done this take vitamin D & Calcium supplements?

I eat almonds, that takes care of all of it.

Gwen

[Guest guest]

Removing

milk products from a diet like mine will take some doing. Do

When u see the results it willnot be so hard. Believe me. it will only be a small sacrifice but one that must be made in your own mind first.

i know all of this is terribly confusing and having to deal without the emotional side of it also. but this is the right group, this group has a handle on what is going on and this grouphas dedicated people willing to make the changes needed stay with us

Gwen

[Guest guest]

Ed wrote:

> I don't view having MS as being a change in my path, just a

>different event on it. Journey well, be happy, and stay inspired as

>this will inspire others.

>Peace,

>Ed

Good Morning Ed;

Couldn't sleep for the second night in a row, and was delighted to get your

e-mail for my morning read.

I am also divorced from the father of my three kids. My ex-husband is a very

powerful man in town, and he fought me for custody of my kids six years ago

when we divorced ( and I was healthy).

Historically, he has been very bitter and unrelenting in his bid for

custody, including having me followed by undercover goons and intimidating

me.

I have to say, that my present illness has changed our dynamics quite

dramatically. I think he has wished me ill health for so many years, that he

on some level, feels as if he is partly responsible for my M.S., and as

stress goes, perhaps he is. He has been much easier to deal with and more

understanding since I got sick.

At the same time, I have this huge fear that I will deteriorate to the point

where I will be unable to provide the same level of care for my kids, and he

will use this as the ultimate blow to get custody. I have been noticing a

dramatic decrease in my upper body strength the last month or so, and I have

noticed that it is definately affecting my ability to drive. My left arm is

too weak to turn the wheel of my van when I need to make a sharp turn. I'm

going to look into what my options are for a very easy to turn power

steering vehicle. Any suggestions? Anyways, to get to the point, I fear I

will get to a point where it is not practical for me to deal with the daily

needs of my kids in terms of driving, laundry, cooking, and other physical

activities and that they would on a very basic level be better off living

with their dad. This is a very hard one for me to even verbalize.

I am remarried, and my present husband has been incredibly supportive,

growing our wheatgrass and sprouts, doing all of the laundry, shopping,

cooking and childcare. I just don't know how much more I can possible expect

him to do!

My attempts at physical training and strengthening my muscles seems futile.

I find that I spend 45 minutes: 10 minutes walking on a treadmill holding

onto the bar, 20 minutes of weight bearing activity for my upper body with

very light weights, and 15 minutes in the pool, doing knee up-walking

exercises. Afterwards, I sleep for about two hours to recouperate. I do this

once a week, but find no imrovement. My body just does not retain the

information. Sometimes I actually think it is making me worse. Any comments

on people out there involved in physical training or physio? Do you see

improvement?

Very frustrated at the moment....

Regards;

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[Guest guest]

Steve wrote:

>Pretty neat stuff coming from a 5 year old.

>I couldn't see hiding it from him nor dwelling on it either, When it

>needed to be discussed it was. Without undue remorse & absolutely

>without fear. Since he knows that with Jesus, there is no need for

>fear.

>I know that everyone is not a Christian. But all faiths lend comfort

>when calm adults explain these things in a simple & rational way,

>spending more time listening than speaking.

>

>Hope this helps,

>Steve

Dear Steve;

Thank You for your thoughts. They are indeed helpful! You sound like you

have a great kid....and smart too!

Regards;

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[Guest guest]

Anyways, to get to the point, I fear I will get to a point where it

is not practical for me to deal with the daily needs of my kids in

terms of driving, laundry, cooking, and other physical activities and

that they would on a very basic level be better off living with their

dad.

Hi again,

Gwen said it best , Live today, no one, MS or otherwise, knows

of tomorrow. We hope, and that hope gives us reason to stretch

today, but we really do not know tomorrow, and the neatest thing is

when tomorrow gets here it's today and here we are already living for

today. So you see if you live for today you are covered.

you again:

Any comments on people out there involved in physical training or

physio? Do you see improvement?

Very frustrated at the moment....

my last comment I promise:

Talk out your frustrations; just don't give up. There are many

people in your corner with you, just like you are in so many corners

with all of us. It's real and it works.

Peace, Love, and Hope,

Ed

[Guest guest]

Steve,

Yes, it can happen very quickly. In fact, if I eat sugar, increased tingling starts almost immediately. Dairy usually takes hours or until the next day for me to notice the effects.

Carol

Well, You guys were probably right. I abstained form milk all week. Then had pizza, fried mozzarella, & a glass of milk. I feel awful!

Should it be noticeable that quickly?

Yesterday also began some mild dizziness & a spacey sort of visual impairment. Most noticeable when I first woke up & when bending over. I suppose this is what you had been talking about?

Steve

[Guest guest]

Well, You guys were probably right. I abstained form milk all week.

Then had pizza, fried mozzarella, & a glass of milk. I feel awful!

Should it be noticeable that quickly?

Yesterday also began some mild dizziness & a spacey sort of visual

impairment. Most noticeable when I first woke up & when bending over.

I suppose this is what you had been talking about?

Steve

> In a message dated 1/8/02 1:22:32 PM Eastern Standard Time,

sls247@l...

> writes:

>

>

> > Removing

> > milk products from a diet like mine will take some doing. Do

>

> When u see the results it willnot be so hard. Believe me. it will

only be a

> small sacrifice but one that must be made in your own mind first.

>

> i know all of this is terribly confusing and having to deal without

the

> emotional side of it also. but this is the right group, this group

has a

> handle on what is going on and this grouphas dedicated people

willing to make

> the changes needed stay with us

> Gwen

[Guest guest]

Ed wrote:

>my last comment I promise:

>Talk out your frustrations; just don't give up. There are many

>people in your corner with you, just like you are in so many corners

>with all of us. It's real and it works.

>

>Peace, Love, and Hope,

>Ed

Dear Group;

So many of you took the time out to comment on my last e-mail, I just wanted

to write everyone back and thank you for all your suggestions, comments and

life philosophy. It always amazes me how much of this illness and its

progression or remission are mind set! You all help me keep positive and

living in the moment!

My legs were quite bad this week, and I don't know if it is enough of an

increase in symptoms to call it an exaserbation, or if it is just from

overtiredness and too much physical activity. I still haven't quite figured

out the attack....remission thing yet, since I always experience some

symptoms, but mildly at times, more so at other times. This week has been

pretty yucky.

But... I did teach a Qi Gong class this morning and managed to get through

that. It's funny how I have to use my cane to get up the stairs to my

fitness centre, but once I'm focussing of the flow of energy in my Qi Gong

class, I can do the physical movements required without too much problems

with balance.

I know some of you have religious affiliations that help you with your

illness... I have a weird history with that stuff, cause I was very

religious for ten years, but married at the time to a really abusive

orthodox rabbi. I finally got out of the marriage, but also abandoned my

religion. I felt that god had abandoned me. In some ways I think that this

event was the catalyst to my M.S., and that part of my cure will come when I

re-establish some type of connection to my creator.

I'm telling this story cause I kind of had a religious epiphany this

week-end, that I thought was neat, and wanted to relate the story.

In my teens, when I was religious, we used to have this kaballistic

technique of using the Old Testiment as a kind of I-Ching ( fortune

telling). You would sit and meditate on the question you wanted guidance on,

flip the book open, follow a specific sequence of numerology, until you

landed on the sentence that was your answer. On the one and only occasion

that I did this, I was having some typically neurotic teen-age angst about

some boy, and sitting alone in my apartment, asked the question...what

should I do? The answer was a sentence from the story of the plauges in

Egypt that reads... " Only within the borders of Goshen, it shall not hail "

This is in reference to the plaugue of hail, where god made it hail

everywhere in Egypt, except in the township of Goshen where the Jews lived.

This was to prove to the Pharoh that the hail storm was an act of god, and

not a natural occurance. As I was sitting in my apartment contemplating the

metaphoric connection to my question, i.e., if you stay within your own

borders, comfort zone and what you know is right, you won't get knocked

around; it actually started hailing outside! There I was, 19 yrs old, in

Toronto in August, watching this amazing hail storm smashing down on the

windows of my apartment! To say the least, this definatly was one of the

reasons why I became more religious, and married a rabbi.

Now, six years after my divorce, I haven't stepped inside a synagogue,

unless attending in order to chaparone my kids, who have remained religious.

I felt so down on Saturday, that for the first time I decided to go to

services by myself for my own reasons. ( I also wanted to say a prayer for

healing for Gwen). The Old Testiment is read every week, chapter by chapter

as part of the service. And guess which sentence popped up again, completely

by coincidence? " Only within the borders of Goshen, it shall not hail! "

So that's it. My religious epiphany. I don't know if the interpretation is

that if I stay within the boundaries of my present diet and M.S. protocols,

that I will not experience as many symptoms, or whether it is referring to

me remaining within the borders of my religion and re-establishing my

connection to the creator. Don't know. But thinking about it.

Sorry!

Long story!

Thanks for listening!

Regards;

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