Re: Welcome to mscured@onelist.com

March 30, 1999

Hello. My name is Kim. Im 29 and was pretty much diagnosed with MS. I am

married with one child. I have to go in for a spinal tap on Monday and for 3

other test on Thurs. I am pretty scared about all of this but the doctor

seems pretty optimistic.

At the end of Jan I had an MRI and they found one lesion. At first they

thought I had a brain tumor. I had an angiogram and that came back normal.

Then they thought I had a stroke because the symptoms pretty much cleared

up. Last Friday I went back to the doctor because I was getting new

symptoms that would come and go through out the day...not lasting more than

a minute. I had another MRI on Monday and now I have 3 lesions. The

original one has grown and I have two more. Im not looking forward to my

spinal tap on Monday. The doctor is being nice and letting my husband go in

with me for the procedure. It's a good thing... actually it would be

better if they just knocked me out and got it over with ) Im not the best

with needles but I guess I need to toughen up a bit.

I look forward to hearing about your experiences.

Kim

Skinzzy@...

March 31, 1999

At 21:32 30.03.99 -0800, you wrote:

>

>Hello. My name is Kim. Im 29 and was pretty much diagnosed with MS. I am

>married with one child. I have to go in for a spinal tap on Monday and for 3

>other test on Thurs. I am pretty scared about all of this but the doctor

>seems pretty optimistic.

Hello ,

Welcome to the group.

My English is not very good, please explain me what is " spinal tap " .

Anyway, you should maybe first consider visiting your dentist.

As much as I know about MS, (Norway is No.1 Country in the world) there are

two persons who can help you cure MS much more then your doctor.

Person No1 is your dentist.

Person No2 is person who is making food that you eat.

If " No1 " and " No2 " do a good job, you will not need " No3 " , your MD.

MS is caused by Toxemia, and any treatment that does not addresses that

cause will fail to cure it.

By the way, how many people do you know who have cured MS by following

guidelines/treatments of their doctor ( " No3 " ) ?

Actualy, I do not know one single person.

And I know many whose condition was only getting worse and worse, as the

years passed.

On the other side, I met three persons who , after understanding that help

from No3 does not work, have asked for help " No1 " and " No2 " and now are MS

free.

So, I would reconsider seriously my decisions about future treatment.

Odds are , without good work of " No1 " and " No2 " toxemia will not be cured.

This is what I would do if suspected/diagnosed with MS:

http://home.sol.no/~dusan/ms.html

Actually, if you go detaily through these suggestions, you will see that

you are suppose to be the person who can help yourself most, after your

dentist have finished his good work.

These are the questions that I would ask the doctor that offer to treat my MS:

- Why should I let him treat me, and not let someone else do it ?

- How many people have he cured ? To get a tel. No. to contact them.

- What are the side effects of his treatment ?

- What are the chances that his treatment does not work ?

- If chances are like they are, why shoild you asccept treatment ?

-

Print those questions, and give it to your MD.

If he is not able to give a good answer on those questions, I would ask for

adwice another doctor.

I am wondering about his answers. (Tho I know the answers :-)

Please , tell us more about your health/teeth/diet/symptoms.

I hope that my ideas may help you.

Dusan Stojkovic

Norway

May 21, 1999

Thank you for the welcome! My name is Pam Rowe. I live outside Spokane Wa

where I understand there is a high incidence of MS. I have had it about 10

years now and went from attack/remission into progressive. I am steadily

becoming weaker and am fighting it every step of the way. I used to use

Betaseron until it made huge sores where I injected and the depression was

getting bad. I went to a new nuerologist that took me off it and put me on

Methotrexate. It did keep it in check but when my hubby went on strike I quit

taking it because of the cost. I am looking at starting it again. I am 47 now

and have 3 daughters. The youngest is 18 so I am almost an empty nester too.

My husband is very supportive and has been all through this. We will be

married 24 years next month. He is my rock. If I have him I don't use my cane

because he holds my hand and supports me =). I look forward to sharing and

learning from this group.

Love & Kisses

Pam

May 21, 1999

please update your file i have change to Dalcrazy7@... since we have

adopted two new dals

May 23, 1999

Dear Pam,

My Name is Mandy, and I live in Fla. I also have a husband

that is the rock and a tremendous source of strength for me. I am new to

this list, and not exactly sure what is appropriate/not appropriate on

the list. I was first diagnosed with TM in Aug. 1994, in Feb. 1996 they

changed my Dx to Ms. I have spent the last three years in denial,

hoping, praying that they were wrong. (fear). I know that I was being

foolish, but they make mistakes, and I was banking that my Dx was one of

them. I have had four confirmations from other neuro's just in the last

6 months, so denial is not an option anymore. ( as if I should have

considered it one to begin with right ? ) In any event, I haven't read

or heard much on the subject of MS, and signed on to this list in the

hope of learning more about this thing that hurts my body, and to read

the shared experiences of others who have it. I am 33, mother of three,

boy 9, girl 8, boy 5, (the older two live with my ex-husband). I am

fighting him right now for my visitation rights, he doesn't seem to

think that I am capable of being a mom from a wheelchair, although my

youngest son is happy and healthy and well adjusted and does beautifully

in school. Aside from what is already going on/hurting with my body,

stress seems to make it worse. With any elevation in adrenaline or

emotion, the spasms will go nuts and start beating me down. Is there

anyone else on this list that suffers similar symptoms, and if so, what

have you found beneficial in relieving them ?

I thank you sincerely for your time in reading this, Mandy

May 23, 1999

In any event, I haven't read

>or heard much on the subject of MS, and signed on to this list in the

>hope of learning more about this thing that hurts my body, and to read

>the shared experiences of others who have it.

Mandy, Hi. My name is . I have had progressive MS, for 27 years now.

If you have any questions about anything that is happening with you, please

email me. I may be able to help. Thanks.

Dj

May 23, 1999

- Thank you for the warm welcome..... I was wondering what if any

response I would get to my questions. I am relieved to find that there

are nice people like you that are willing to share. I do not have time

this morning, but I will this evening, get into some of the problems

that I am having, and my question/concerns. I did want to make sure and

send you my thanks though right away, I seem to forget things if I don't

take care of them right away, and thank you is not something that I like

to forget. Have a great Sunday ! :-) Mandy

May 23, 1999

Mandy

Where in Florida are you. I also live i Florida

May 23, 1999

I live on the west coast, and you ?

August 15, 1999

Hi everyone!

I'm Glenna and just joined the mscured mailing list. I have some

MS questions, but in this message I'll introduce myself and give you

some background about my experience with MS

I was diagnosed with Multiple Sclerosis in May 1997, at the age of 38,

though I had mild symptoms since the mid 1980s (my mid twenties). In

1993 I had my first bout with Optic Neuritis in my right eye, which

caused a blurring of vision and pain, which remitted and then happened

in the left eye and remitted. I also had numbness in my torso. After a

few of these episodes, I knew that I probably had MS, but didn't want to

be diagnosed. Unfortunately, by spring 1997, my symptoms had gotten much

worse, including a reoccurrence of my eye problems, nystagmus in my

right eye, a staggering gait, dizziness and balance problems, numbness

in my face and arms, extreme fatigue and some cognitive problems. These

problems, unlike previous problems, didn't remit. I knew that I needed

to get help. I was motivated to do some of my own " research " to find the

treatment approach I wanted to follow. Because the accepted practices of

most neurologists didn't seem to have much scientific support, I kept

searching - and then found the Swank clinic. Dr. Swank's long term

experience treating the disease and theories made a lot of sense. His

studies of patients following his program for more than 30 years backed

up his theories and gave me encouragement that I could improve. Through

MRI, evoked potentials and other tests, Dr. Swank confirmed that I did

have Multiple Sclerosis.

After being diagnosed, I immediately started the Swank diet/stress

reduction and rest program. I make sure I don't exceed the allowable

amounts of fat and make sure I have a daily mid-day rest. I've found the

mid-day rest to be a very important part of the Swank treatment program

and a great stress reduction technique. I work full time, but now avoid

work-related stress as much as possible. Within a month, I experienced a

lessening of symptoms, although Dr. Swank and his staff have informed me

that it usually takes patients 3-5 years to see improvement.

With the encouraging results of the Swank program, I decided to

investigate and pursue other natural approaches, as long as they didn't

interfere with the principles of the Swank program. I identified by

pulse test many foods to which I'm allergic. I began avoiding them. I

found that many MS patients have B12 deficiencies. I had my B12 level

tested and found that it is low. I am now supplementing it with weekly

intramuscular B12 injections. I had blood nutrient levels tested, and am

addressing nutritional deficiencies that were found by taking

nutritional supplements (cod liver oil, evening primrose oil, flax seed

oil, antioxidants and vitamins). After one year, many of my symptoms

disappeared. I no longer have a staggering gait. My dizziness and

balance problems are much improved. The numbness in my face and arms is

gone. My fatigue is much better. My eye problems have remained with me,

as have (to a lesser degree than before) some of my cognitive problems.

I haven't had any new symptoms since I started the Swank diet (and I

used to have 1-2 new episodes every 6 months). I had my digestive

functions tested and found that I have intestinal dysbiosis and a

permeable intestine. Upon further investigation, I found that many MS

patients can't digest some complex carbohydrates, such as grains. I've

begun to avoid grains and other carbohydrates that are difficult to

digest. I also make sure that I drink 8 glasses of pure water every day.

Although I still have some problems, I've improved a tremendous amount

since I first saw Dr. Swank in 1997 and am sure that I have followed the

correct treatment approach. When I first went to the Swank clinic, I was

sure that my disease would soon lead me to a wheelchair. Now I run, lift

weights and look forward to a bright future.

I'm very glad that I have followed a " natural " approach - it has worked

well for me. From my experience, I can recommend a low saturated fat diet,

mid day rest and avoiding stress, 8 glasses of water per day, avoiding

allergens and foods that are difficult to digest and taking supplements

as necessary - especially B12 if required (most MS patients have low B12

levels).

Hope this is helpful! As I mentioned, I will probably ask some questions

in my next message .

Glenna

August 15, 1999

Hi! I'm Elaine and am glad to find a site like this!

I'm searching for my third neurologist (I will always use medical treatment,

but am interested in learning about other therapies that can be combined

with it). The first neurologist I went to confirmed that I had MS through

an MRI and put me on anti-depressants, saying that being diagnosed causes

depression as does the disease itself. Everytime I went to him complaining

of my fatigue, he said it must be the anti-depressant and either changed me

to a different one or cut the dosage back. Nothing he did helped the

fatigue and cutting back on the anti-depressants sent me into a blue funk.

The interferons were just coming out then, but he said that I wasn't bad

enough to go on them.

Finally, after about 4 years, I changed doctors. He put me on one drug for

the depression (can't remember what it was), but it didn't work. He then

gave me ritalin, which has helped immensely. In March I had numbness,

tingling, etc. (we all know about this) in my left leg. It's still here,

concentrated at and above my knee and has spread to the bottom of both feet.

He had me have an MRI and we discussed my starting one of the interferons.

I started Avonex in June. At my July appt., he said that since my MRI

hadn't changed from 93, that he doubted I really have MS! When I asked him

what I do have, he didn't have an answer. My sister also has MS (unususal,

I know) and was in one of the original test groups for Betaseron. The

doctor then said that he doubted my sister has MS (she lives 1000 miles

away) and we probably have some type of weird genetic family disease! I

asked him how to treat it and he said to continue as we were! He never did

do an MRI of my spine, so it could be crawling with lesions, or, as we all

know, one can have lesions without symptoms and symptoms without lesions.

I've babbled on enough for a while.

Elaine

Welcome to mscuredonelist

>Hello,

>

>Welcome to the list. Please take a moment to review this message.

>

>We are people sharing information on Multiple Sclerosis.

>

>Read Archives of this list:

>http://www.onelist.com/archives.cgi/mscured

>

>Hello,

>

>Welcome to the list. Please take a moment to review this message.

>

>_______________________________________________

>

August 26, 1999

Raven,

good luck to you. And, you know theirs a way out, go to doctors but, be

careful. You'll find a better way.

s'

>From: Rainwmyn@...

>Reply-To: mscuredonelist

>To: mscuredonelist

>Subject: Re: Welcome to mscuredonelist

>Date: Thu, 26 Aug 1999 08:38:16 EDT

>

>From: Rainwmyn@...

>

>Merry Meet,

>My name is Raven .... I live in Charlotte,NC

>medical; numbness in arms,legs,face,..pins and needlesin arms and

>legs,dizzyness,

>speech problems,hearing loss at times,pressure in ears,falling,draging

>legs,balance gone,pain that goes from my head down my spine that feels like

>for example like sticking your tounge on a d battery, ,repeated yeast

>infectionsc,urinary problems,tremors,days i cant walk.fatigue,simple task

>wear me out,trouble sleeping,not dx with ms yet..was hospitalized ran test

>then was only nubness and tingling in legs and bad headaches,nothing showed

>up but have gotten worse since I got out,valium helps the tremors,loratab

>helps some with pain,effexor which Ive been on for a while takes care of

>the

>deppression, was told this stuff was in my head I refuse to belive that

>cause

>other people see my tremors and etc. even strangers have commented on

>it...seen eye doctor who told me that he is sure I have ms and I just have

>to

>wait till the lesions to show up before a doctor will dx me.says they are

>afraid of malpractice..my mother has ms we suffer samethings

>in this life I am a Libra, Iam taken heart n soul by a lovley womyn

>my life: reading,womyns music, , honoring the Goddess, drawing down the

>moon, being me,arts & culture,playing with my dogs:Tippy, and chasing

>after kids;,Marissa, and lovin my womyn; music;travel.. and giving

>my

>cat Din all the space she needs

>Fav qoutes: Due to financial constraints, the light at the end of the

>tunnel

>has been extinguished.Mentally confused and prone to wandering;

> Any choice is a limitation,for it eliminates other possiablities.

>Unless we realize that what we do has an impact on others, we cannot truly

>be

>free, for freedom is never the complete absence of restrictions but rather

>the abilty to make the choices that will best serve our interests.

>

>Blessed be,

>Raven

>

>---------------------------

August 26, 1999

Merry Meet,

My name is Raven .... I live in Charlotte,NC

medical; numbness in arms,legs,face,..pins and needlesin arms and

legs,dizzyness,

speech problems,hearing loss at times,pressure in ears,falling,draging

legs,balance gone,pain that goes from my head down my spine that feels like

for example like sticking your tounge on a d battery, ,repeated yeast

infectionsc,urinary problems,tremors,days i cant walk.fatigue,simple task

wear me out,trouble sleeping,not dx with ms yet..was hospitalized ran test

then was only nubness and tingling in legs and bad headaches,nothing showed

up but have gotten worse since I got out,valium helps the tremors,loratab

helps some with pain,effexor which Ive been on for a while takes care of the

deppression, was told this stuff was in my head I refuse to belive that cause

other people see my tremors and etc. even strangers have commented on

it...seen eye doctor who told me that he is sure I have ms and I just have to

wait till the lesions to show up before a doctor will dx me.says they are

afraid of malpractice..my mother has ms we suffer samethings

in this life I am a Libra, Iam taken heart n soul by a lovley womyn

my life: reading,womyns music, , honoring the Goddess, drawing down the

moon, being me,arts & culture,playing with my dogs:Tippy, and chasing

after kids;,Marissa, and lovin my womyn; music;travel.. and giving my

cat Din all the space she needs

Fav qoutes: Due to financial constraints, the light at the end of the tunnel

has been extinguished.Mentally confused and prone to wandering;

Any choice is a limitation,for it eliminates other possiablities.

Unless we realize that what we do has an impact on others, we cannot truly be

free, for freedom is never the complete absence of restrictions but rather

the abilty to make the choices that will best serve our interests.

Blessed be,

Raven

August 27, 1999

kathy,

look at a web-site I put together.

http://198.64.33.30/Ayurvedic_MS/Default.html

my alternative stuff but, I have found you can do things here with diet as

well as medicine to get healthy. I'm doing ayurvedic med here and in India.

Much better now then when I was listening to my nuerologist here.

Now, I added Patanjali yoga. Try whatever feels right to you; be careful

because theirs a lot out there.

subhash

>

>Reply-To: mscuredonelist

>To: <mscuredonelist>

>Subject: Re: Welcome to mscuredonelist

>Date: Fri, 27 Aug 1999 11:19:22 -0400

>

>I was diagnosed with MS the day after my now deceased husband went into the

>hospital for a bone marrow transplant. We had a five year old son who was

>in danger of losing his dad and a mother who doesn't know what the future

>will bring. The year was 1995. After taking a trip south for vacation in

>1996 and having a relapse my doctor put me on Avonex. It's not much fun

>having to get a shot every week but if it helps keep me mobile I'll do it.

>My doctor doesn't seem to be too interested in natural remedies to help or

>running bloodtests to see how my body is reacting to the Avonex. I'm

>interested in hearing what other people do to cope.

>

> >>> <mscured-owneronelist> 08/27/99 10:42AM >>>

>Hello,

>

>Welcome to the list. Please take a moment to review this message.

>

>We are people sharing information on Multiple Sclerosis.

>

>Read Archives of this list:

>http://www.onelist.com/archives.cgi/mscured

>

>Hello,

>

>Welcome to the list. Please take a moment to review this message.

>

>_______________________________________________

>

August 27, 1999

I was diagnosed with MS the day after my now deceased husband went into the

hospital for a bone marrow transplant. We had a five year old son who was in

danger of losing his dad and a mother who doesn't know what the future will

bring. The year was 1995. After taking a trip south for vacation in 1996 and

having a relapse my doctor put me on Avonex. It's not much fun having to get a

shot every week but if it helps keep me mobile I'll do it. My doctor doesn't

seem to be too interested in natural remedies to help or running bloodtests to

see how my body is reacting to the Avonex. I'm interested in hearing what other

people do to cope.

>>> <mscured-owneronelist> 08/27/99 10:42AM >>>

Hello,

Welcome to the list. Please take a moment to review this message.

We are people sharing information on Multiple Sclerosis.

Read Archives of this list:

http://www.onelist.com/archives.cgi/mscured

Hello,

Welcome to the list. Please take a moment to review this message.

_______________________________________________

August 27, 1999

Hi all.

Good afternoon Kathy. I have only been on Avonex for three weeks and hate

the side effects. But in order to remain in remission, I will do whatever

is necessary. My doctor will be doing blood work on an as needed basis just

to ensure that things are going alright elsewhere in my body. I have been

seeking natural remedies myself and will pass them along as I find them. I

did find some interesting reading at www.cayce.com/ms.htm

<http://www.cayce.com/ms.htm> It had to do with Edgar Cayce who was known

for his intuitive healing.

Wish you the best.

Rita

PFS Systems Coordination

Email: rrivera@...

J

Re: Welcome to mscuredonelist

I was diagnosed with MS the day after my now deceased husband went

into the hospital for a bone marrow transplant. We had a five year old son

who was in danger of losing his dad and a mother who doesn't know what the

future will bring. The year was 1995. After taking a trip south for vacation

in 1996 and having a relapse my doctor put me on Avonex. It's not much fun

having to get a shot every week but if it helps keep me mobile I'll do it.

My doctor doesn't seem to be too interested in natural remedies to help or

running bloodtests to see how my body is reacting to the Avonex. I'm

interested in hearing what other people do to cope.

>>> <mscured-owneronelist> 08/27/99 10:42AM >>>

Hello,

Welcome to the list. Please take a moment to review this message.

We are people sharing information on Multiple Sclerosis.

Read Archives of this list:

http://www.onelist.com/archives.cgi/mscured

Hello,

Welcome to the list. Please take a moment to review this message.

_______________________________________________

August 27, 1999

Howdy,

I have been diagnosed with MS since my son was 6 months old, he is now 15 and

driving. When the meds came out I was on Betaseron for 2 1/2 years and then

went on Avonex for 2 years - I am now on Copaxone (an injection every day). I

thought the side effects were bad on the interferon injections. NOT!! Anyway,

the best way to cope with all of it is to take one day at a time. I did find

that for me Tylenol by itself just didn't work so I started taking the Tylenol

cold medicine (the one for fever and aches and pains) I found this to be

extremely helpful. The bright side to this is after a while your body seems to

get used to it. Anyway, Good luck and stick it out - There will be a cure one

day very soon. Think positively, which I know is harder than it sounds. Take

care. Talk to you soon.

Candace

Cmmeeks@...