Re: Rejoining after a long absence.........

[Guest guest]

Welcome back to the MSerslife " fold, " Donna, love, n Rojas

-------------- Original message ----------------------

> Hey Honey I'm home!!!!!!!

>

> It's been several system crashes since I last spoke with any of you...

> My subscription to MSersLife got lost in goodness knows where, but today

> I was thinking about you all again, and this time decided that I had

> time to search through ALL the yahoo groups until I found the right one!

> So I'm back....

>

> Let me reintroduce myself, to those who may remember me, to those who

> have never heard of me and such...

>

> My name is Donna. I am 48 years old, and was diagnosed with MS in August

> of 2000. Never had a possible or probable added to the diagnoses, it was

> from the get-go definite. I guess I passed (or failed, depending on how

> you look at it) all the tests with flying colors. Seven lesions on the

> original MRI, as well as Optic Neuritis, then the Visual Evoked and

> maybe a few more along with the Lumbar Puncture... And then with a

> medical history, my neurologist said that it was pretty clear that I'd

> had the MonSter with me for at least 10 years before my diagnosis.

>

> I started Avonex therapy in September of 2000, and continued on it for 4

> years... having the flu-like symptoms every week for those 4 years

> (Ughhh, but it was working, MRI's showed resolved lesions)..

>

> I stopped taking Avonex 3 years ago this coming April... also stopped

> seeing my neurologist about that time. I asked him to add Copaxone to my

> Avonex, and he refused, suggested Novantrone, and I told him that

> Novantrone was out of the question, and that I'd wait for the Antegren

> (Tysabi or however it's spelled) to be released.... that was a quick

> release and withdrawal from the market, and I didn't get started

> there... so I did without until this October.

>

> Doc refused to prescribe ANY meds for me until I came in to see him, as

> he hadn't seen me in like 2 years... He ordered a new baseline MRI,

> which came back with wonderful new lesions bi-laterally... Needless to

> say he was adamant about me getting on some type of therapy, and I

> agreed that I needed something, but was just as adamant about it NOT

> being Novantrone, Avonex, Rebif, Betaseron and even the Tysabi that was

> to be re-released... the only thing left, and he gave in on, was Copaxone...

>

> So now I'm back on therapy, and I think I'll stay on this stuff for

> quite awhile....

>

> And that's what's been happening.. well not all of it... since my last

> encounter with the group..

>

> Thanks for having me... looking forward to hearing for ya'll again..

>

> |)onna

Hey Honey I'm home!!!!!!!

It's been several system crashes since I last spoke with any of you...

My subscription to MSersLife got lost in goodness knows where, but today

I was thinking about you all again, and this time decided that I had

time to search through ALL the yahoo groups until I found the right one!

So I'm back....

Let me reintroduce myself, to those who may remember me, to those who

have never heard of me and such...

My name is Donna. I am 48 years old, and was diagnosed with MS in August

of 2000. Never had a possible or probable added to the diagnoses, it was

from the get-go definite. I guess I passed (or failed, depending on how

you look at it) all the tests with flying colors. Seven lesions on the

original MRI, as well as Optic Neuritis, then the Visual Evoked and

maybe a few more along with the Lumbar Puncture... And then with a

medical history, my neurologist said that it was pretty clear that I'd

had the MonSter with me for at least 10 years before my diagnosis.

I started Avonex therapy in September of 2000, and continued on it for 4

years... having the flu-like symptoms every week for those 4 years

(Ughhh, but it was working, MRI's showed resolved lesions)..

I stopped taking Avonex 3 years ago this coming April... also stopped

seeing my neurologist about that time. I asked him to add Copaxone to my

Avonex, and he refused, suggested Novantrone, and I told him that

Novantrone was out of the question, and that I'd wait for the Antegren

(Tysabi or however it's spelled) to be released.... that was a quick

release and withdrawal from the market, and I didn't get started

there... so I did without until this October.

Doc refused to prescribe ANY meds for me until I came in to see him, as

he hadn't seen me in like 2 years... He ordered a new baseline MRI,

which came back with wonderful new lesions bi-laterally... Needless to

say he was adamant about me getting on some type of therapy, and I

agreed that I needed something, but was just as adamant about it NOT

being Novantrone, Avonex, Rebif, Betaseron and even the Tysabi that was

to be re-released... the only thing left, and he gave in on, was Copaxone...

So now I'm back on therapy, and I think I'll stay on this stuff for

quite awhile....

And that's what's been happening.. well not all of it... since my last

encounter with the group..

Thanks for having me... looking forward to hearing for ya'll again..

|)onna

[Guest guest]

(((Donna)))

Glad to see you back! And I'm glad to hear that you've found a treatment that you can live with. I'll be going back to the neurologist Jan. 3rd to have a bunch of new tests done also. I've had another of many flare ups. I don't even get into remission good before I'm knocked down again. Maybe it's not RRMS anymore? I don't know but eager to find out!

Hope you had a wonderful Christmas! Talk to you soon!

http://360.yahoo.com/vallee45

-- Rejoining after a long absence.........

Hey Honey I'm home!!!!!!!It's been several system crashes since I last spoke with any of you... My subscription to MSersLife got lost in goodness knows where, but today I was thinking about you all again, and this time decided that I had time to search through ALL the yahoo groups until I found the right one! So I'm back....Let me reintroduce myself, to those who may remember me, to those who have never heard of me and such...My name is Donna. I am 48 years old, and was diagnosed with MS in August of 2000. Never had a possible or probable added to the diagnoses, it was from the get-go definite. I guess I passed (or failed, depending on how you look at it) all the tests with flying colors. Seven lesions on the original MRI, as well as Optic Neuritis, then the Visual Evoked and maybe a few more along with the Lumbar Puncture... And then with a medical history, my neurologist said that it was pretty clear that I'd had the MonSter with me for at least 10 years before my diagnosis.I started Avonex therapy in September of 2000, and continued on it for 4 years... having the flu-like symptoms every week for those 4 years (Ughhh, but it was working, MRI's showed resolved lesions)..I stopped taking Avonex 3 years ago this coming April... also stopped seeing my neurologist about that time. I asked him to add Copaxone to my Avonex, and he refused, suggested Novantrone, and I told him that Novantrone was out of the question, and that I'd wait for the Antegren (Tysabi or however it's spelled) to be released.... that was a quick release and withdrawal from the market, and I didn't get started there... so I did without until this October.Doc refused to prescribe ANY meds for me until I came in to see him, as he hadn't seen me in like 2 years... He ordered a new baseline MRI, which came back with wonderful new lesions bi-laterally... Needless to say he was adamant about me getting on some type of therapy, and I agreed that I needed something, but was just as adamant about it NOT being Novantrone, Avonex, Rebif, Betaseron and even the Tysabi that was to be re-released... the only thing left, and he gave in on, was Copaxone...So now I'm back on therapy, and I think I'll stay on this stuff for quite awhile....And that's what's been happening.. well not all of it... since my last encounter with the group..Thanks for having me... looking forward to hearing for ya'll again..|)onna

Font CountryCharm

Art by Engelbreit

July, 2006

[Guest guest]

I'm SO glad to have you back Donna. I wondered what happened to you. I have definately missed you!Sharon I was trying to daydream, but my mind kept wandering. Rejoining after a long absence.........

Hey Honey I'm home!!!!!!!

It's been several system crashes since I last spoke with any of you...

My subscription to MSersLife got lost in goodness knows where, but today

I was thinking about you all again, and this time decided that I had

time to search through ALL the yahoo groups until I found the right one!

So I'm back....

Let me reintroduce myself, to those who may remember me, to those who

have never heard of me and such...

My name is Donna. I am 48 years old, and was diagnosed with MS in August

of 2000. Never had a possible or probable added to the diagnoses, it was

from the get-go definite. I guess I passed (or failed, depending on how

you look at it) all the tests with flying colors. Seven lesions on the

original MRI, as well as Optic Neuritis, then the Visual Evoked and

maybe a few more along with the Lumbar Puncture... And then with a

medical history, my neurologist said that it was pretty clear that I'd

had the MonSter with me for at least 10 years before my diagnosis.

I started Avonex therapy in September of 2000, and continued on it for 4

years... having the flu-like symptoms every week for those 4 years

(Ughhh, but it was working, MRI's showed resolved lesions)..

I stopped taking Avonex 3 years ago this coming April... also stopped

seeing my neurologist about that time. I asked him to add Copaxone to my

Avonex, and he refused, suggested Novantrone, and I told him that

Novantrone was out of the question, and that I'd wait for the Antegren

(Tysabi or however it's spelled) to be released.... that was a quick

release and withdrawal from the market, and I didn't get started

there... so I did without until this October.

Doc refused to prescribe ANY meds for me until I came in to see him, as

he hadn't seen me in like 2 years... He ordered a new baseline MRI,

which came back with wonderful new lesions bi-laterally. .. Needless to

say he was adamant about me getting on some type of therapy, and I

agreed that I needed something, but was just as adamant about it NOT

being Novantrone, Avonex, Rebif, Betaseron and even the Tysabi that was

to be re-released. .. the only thing left, and he gave in on, was Copaxone...

So now I'm back on therapy, and I think I'll stay on this stuff for

quite awhile....

And that's what's been happening.. well not all of it... since my last

encounter with the group..

Thanks for having me... looking forward to hearing for ya'll again..

|)onna

__________________________________________________

[Guest guest]

Welcome back Donna!

I am new to the group and new MSer. I was just diagnosed in the

last few weeks and I am awaiting assessment and treatment

recommendations. It seems you have been through the ringer with the

different treatments. I am inspired by your courage and commitment

wow three years with flu symptoms!!!

I look forward to getting to know you and the other members in the

community.

Kim from Ontario, Canada

Mom to Jenna 14, 10 and our Border Collie

Casey 4

>

> Hey Honey I'm home!!!!!!!

>

> It's been several system crashes since I last spoke with any of

you...

> My subscription to MSersLife got lost in goodness knows where, but

today

> I was thinking about you all again, and this time decided that I

had

> time to search through ALL the yahoo groups until I found the

right one!

> So I'm back....

>

> Let me reintroduce myself, to those who may remember me, to those

who

> have never heard of me and such...

>

> My name is Donna. I am 48 years old, and was diagnosed with MS in

August

> of 2000. Never had a possible or probable added to the diagnoses,

it was

> from the get-go definite. I guess I passed (or failed, depending

on how

> you look at it) all the tests with flying colors. Seven lesions on

the

> original MRI, as well as Optic Neuritis, then the Visual Evoked

and

> maybe a few more along with the Lumbar Puncture... And then with a

> medical history, my neurologist said that it was pretty clear that

I'd

> had the MonSter with me for at least 10 years before my diagnosis.

>

> I started Avonex therapy in September of 2000, and continued on it

for 4

> years... having the flu-like symptoms every week for those 4 years

> (Ughhh, but it was working, MRI's showed resolved lesions)..

>

> I stopped taking Avonex 3 years ago this coming April... also

stopped

> seeing my neurologist about that time. I asked him to add Copaxone

to my

> Avonex, and he refused, suggested Novantrone, and I told him that

> Novantrone was out of the question, and that I'd wait for the

Antegren

> (Tysabi or however it's spelled) to be released.... that was a

quick

> release and withdrawal from the market, and I didn't get started

> there... so I did without until this October.

>

> Doc refused to prescribe ANY meds for me until I came in to see

him, as

> he hadn't seen me in like 2 years... He ordered a new baseline

MRI,

> which came back with wonderful new lesions bi-laterally...

Needless to

> say he was adamant about me getting on some type of therapy, and I

> agreed that I needed something, but was just as adamant about it

NOT

> being Novantrone, Avonex, Rebif, Betaseron and even the Tysabi

that was

> to be re-released... the only thing left, and he gave in on, was

Copaxone...

>

> So now I'm back on therapy, and I think I'll stay on this stuff

for

> quite awhile....

>

> And that's what's been happening.. well not all of it... since my

last

> encounter with the group..

>

> Thanks for having me... looking forward to hearing for ya'll

again..

>

> |)onna

>

[Guest guest]

Greetings & Salutations Valene!

I am very happy with the Copaxone.. just trying to figure out why

certain injection sites have a reaction and others don't, but a week or

so later, the ones that didn't do and the ones that did don't... I

suppose that I should use the planner that Shared Solutions sent, and

keep track of things.. but..... I forget.. yeah, we'll call it

forgetfulness rather than laziness... LOL

I hate to hear that you're having trouble with exacerbations.. I asked

my neuro, before I quit seeing him those couple of years ago if my RRMS

hadn't converted to SPMS.. he said no.. it was (I think he called it)

Progressive Relapsing now.. (there are two versions.. Progressive

Relapsing and Relapsing Progressive.. one of which only like 1% of

people with MS have.. and that's not the version I have now).. well he

said that's where he'd class it now, because I'm seeing slow but steady

progression but I'm still having definite relapses...

He was quite confusing in that.. because when I'd call on the phone to

tell him I was having a " new " symptom/exacerbation he'd tell me that it

wasn't.. cause exacerbations last for more than 48 hours.. well the one

with lights flashing behind my eyes would have caused me to be committed

IF it had lasted that long... You know those jagged splash type signs

that you see on items that are on sale?... well I had a flashing light

show going on it that shape even with my eyes closed, for a couple hours..

I see the neuro again sometime in February..... I think... I know this

because he only wrote my scripts for 4 or 5 months.. I know my

anti-depressant only has one more refill on it.. good thing is.. his

office WILL call a day or so before my appointment to remind me... Thank

Goodness..

Take care and take it easy.... talk to you soon

|)Onna

Valene wrote:

>

> (((Donna)))

> Glad to see you back! And I'm glad to hear that you've found a treatment

> that you can live with. I'll be going back to the neurologist Jan. 3rd

> to have a bunch of new tests done also. I've had another of many flare

> ups. I don't even get into remission good before I'm knocked down again.

> Maybe it's not RRMS anymore? I don't know but eager to find out!

>

> Hope you had a wonderful Christmas! Talk to you soon!

>

[Guest guest]

Thank you so much Sharon...

I've often thought about you and the others over the past, and I'm

thinking it is close if not more than 3 years...

It's been a fairly confusing and busy 3 years though... I don't remember

(but then some mornings I'm not sure I remember my own name) if I was

still in the group when and I bought our double-wide and the

problems started or not...

But we DID finally get it set up and ready to move in.. and we've been

in here now for three years come April/May.. I just haven't had a whole

lot of luck with my computers for the most part.. I've killed the video

slots on the motherboard of TWO computers.. But then I guess that's what

happens when you do too much of too many things at one time...

So how are you doing these days?

|)onna

Sharon Marsden wrote:

>

>

> I'm SO glad to have you back Donna. I wondered what happened to you. I

> have definately missed you!

>

> Sharon

>

> I was trying to daydream, but my mind kept wandering.

[Guest guest]

Welcome to the group Kim, and thanks for welcoming me back as well.

I'm really sorry that you have need for a group such as this... I'm not

sorry that you found us though.. this is a GREAT group of people, very

caring and committed..

When I was first diagnosed [though I was 99.9% sure that I had MS before

I even mentioned it to a doctor... well I've got a good friend that

lives near me who also has MS, and he and I discussed symptoms and such

before I sought a diagnoses.] I read everything I could get my hands on

and everything I could find on the web concerning MS.. Though my friend

did say that Avonex was a fantastic therapy.. and I still believe that

it is.. I know it works, rather than having to " take it on faith "

because for some reason, that I can't remember now, I needed another MRI

within 4 months of the first MRI.. and in 4 months (being on Avonex

during that 4 months) 4 of the 7 lesions resolved themselves. That may

have been my incentive for putting up with the flu every week for 4

years.. but at the end, I knew it wasn't working for me anymore, well it

wasn't working as well as it did at first.. when I asked my neuro to ADD

Copaxone, because I'd read where some of the leading experts thought

it was a good idea... (double coverage so to speak)... he refused..

And then one day for some reason, I suppose my internet was out or

something I decided to read the insert that came with the Avonex... and

what I read there really concerned me.. but I'm thinking.. someone or

several someones taking Avonex developed Congestive Heart Failure,

though they didn't have prior cardiac problems nor was there any family

history of cardiac problems.. and my paternal grandmother died with CHF,

and my father had been recently diagnosed with CHF.. what was the

likelihood that I would develop it myself.. probably sooner than later..

... added to the fact that even a papercut would become infected.. AND

the flu symptoms... I decided that I was done with Avonex...

Now do NOT take my decision to stop Avonex as gospel... Do your own

research, and decide for yourself which of the treatment paths you'd

like to take.... Not everyone develops the side-effects.. my best

friends sister never had one flu-like symptom in all the years she's

been taking it... If you do decide to go with Avonex.. the one

suggestion I would have for you is to make sure that you are well

hydrated before you inject.. and I'm not talking tea, coffee, soda or

anything other than plain H2O.. at least 4-16 oz bottles of water during

the day of injection.. Seems to help lessen the side-effects..

Another suggestion would be.. Do NOT stop your daily activities if you

can help it.. stay as active as you are now, if you can... Now that I

can stand for more than 5 or 10 minutes at a time (something that came

about with the use of Copaxone)... I've got ALL that muscle tone that

I've lost over the past 4 or 5 years to rebuild.. And yes I gave up on

trying to keep myself as active, because it was too much effort.. Don't

do that to yourself...

This disease does not affect everyone in the same way.. I've got two

friends who were diagnosed a long long long time ago.. One was 23 years

ago.... he still goes out during the summer months and gardens, and he

cleans house and all the stuff " normal " people do.. Another friend, who

lives in Arizona now (but isn't Sharon), has been diagnosed about 23 or

more years.. she just recently had to stop working altogether because of

severe balance issues.. Still I've got another friend who lives in

Connecticut.. who 14 or so years ago was hospitalized for symptoms of

MS.. she was told possible MS all those years ago.. and hasn't had

another symptom since...

Well I've been long-winded enough, and preached from soapbox a little

too long (LOL).. so I'll get off now and give it a rest...

Looking forward to getting to know you as well.. take care...

|)onna

Kim Latour wrote:

> Welcome back Donna!

>

> I am new to the group and new MSer. I was just diagnosed in the

> last few weeks and I am awaiting assessment and treatment

> recommendations. It seems you have been through the ringer with the

> different treatments. I am inspired by your courage and commitment

> wow three years with flu symptoms!!!

>

> I look forward to getting to know you and the other members in the

> community.

>

> Kim from Ontario, Canada

> Mom to Jenna 14, 10 and our Border Collie

> Casey 4

[Guest guest]

I checked and your last post to the group was March 8, 2004. It was a warning not to open anything from you because you had gotten a computer virus. Is that what led to your computer problems? I remember you talking about the double-wide and some of the problems getting it set up. So, what's been happening with me, you say? Oh lets see..... We sold our farm in northern Arizona in Sept. '04 and left for Alaska the end of that month. The "we" is me, my 34 y/o son , his wife , and their 4 children. And our 6 large dogs and our 4 cats (now 7 cats). lol In Alaska we lived in a big drafty cabin on 40 acres back in the woods. We were 2 miles from the road, off grid, got our water from our creek and had an outhouse. We lived a very

spartan life, heated with an old wood stove... etc. We finally got an ARGO (a tracked vehicle) for getting in and out of the property and out to the road. But my first trip in was on a 4-wheeler, through the snow and ice. The 4 wheeler broke a month later. After that all trips out for supplies and mail were by and hiking the 2 miles each way, each towing a sled loaded with provisions until we got the ARGO in January 05. It was beautiful and serene and I did love it there. I wasn't crazy about the long dark days in the deep of winter though What I didn't like was being so far away from Challis and my grandkids in Arizona. I decided my heart belongs in Arizona and we've been back here for a year. So now we are living in the desert but looking for land back up in cooler northern Arizona so we can start over building a new little homestead farm. If you would like to see some photos

of our Alaska life: http://s22.photobucket.com/albums/b335/dorightranch/Since we had no electricity in Alaska I wasn't able to keep up with this MS group. My daughter, Challis, took over the group for me during the time I was gone. I mentioned you to her when you rejoined and I told her "You'll like Donna!" Challis has MS symptoms but no dx yet.MS-wise I have declined since I've been back in Arizona. I've gone through a year of severe nocturnal leg pain that nothing would help. Finally Cymbalta took the pain down 50%. Now I'm on my second month of LDN (Low Dose Naltrexone). I am feeling better because of the LDN and it has had a positive effect on my leg pain bringing the pain down to 10 to 20% of what it was a year ago. I just saw my neuro yesterday and I asked him to increase the LDN dose from 3 mg. to 3.5

mg. Well, that's me in a "nutshell"... so to speak. :)hugs)))Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford Re: Rejoining after a long absence......... Thank you so much Sharon... I've often thought about you and the others over the past, and I'm thinking it is close if not more than 3 years... It's been a fairly confusing and busy 3 years though... I don't remember (but then some mornings I'm not sure I remember my own

name) if I was still in the group when and I bought our double-wide and the problems started or not... But we DID finally get it set up and ready to move in.. and we've been in here now for three years come April/May.. I just haven't had a whole lot of luck with my computers for the most part.. I've killed the video slots on the motherboard of TWO computers.. But then I guess that's what happens when you do too much of too many things at one time... So how are you doing these days? |)onna Sharon Marsden wrote: > > > I'm SO glad to have you back Donna. I wondered what happened to you. I > have definately missed you! > > Sharon > > I was trying to daydream, but my mind kept wandering. __________________________________________________

[Guest guest]

Oh geee.. it has been a long time.. and I seem to remember some sort of

virus... oh and I'll just bet it was that hacker something or other..

And I found it when we went to switch out hard drives on computers.

had gotten me a 200 gigger for my music files, but then I had and 80 gig

that needed to go somewhere besides a shelf.. So we put it in 's

machine... got my computer all set up and ready to go.. was moving files

to my computer from the old drive that was now in his machine.. when

going through directory by directory I noticed this file on the hard

drive on 's machine (didn't realize at the time that it was actually

MY old hard drive).. but the file was something like BIG BODACIOUS TA

TA's... or BODACIOUS BLONDE TA TA's something that order.. and it was

picture file... So I opened the file... LOL There is a picture of this

blonde chickie with these LARGER THAN LIFE, HUGER THAN HUGE Boobies... LOL

Not thinking I closed the file, but turned to and laughing said..

" Just where have you been lately, and what have you been looking at? "

[Now I have to tell everyone this is a man who leads a strictly VANILLA

life, as he puts it... no fantasies, calm, quiet, reserved.. closest

he's ever come to having a fantasy was thinking Gillian from

the X-Files was cute... this is the man that if I wouldn't have gotten

bold & brave one night on ICQ and told him that I wanted to get into his

pants.. would never have even asked for a date!] So when I asked him

this question he right away gets all flustered and stuff.. and I point

to the directory where the picture is... and it's still there.. but when

he clicked to open it, his computer froze up completely, and when he

restarted ALL of the pictures were gone...

Really strange, but then he pointed out that THESE pictures were

actually on MY hard drive, not HIS.. LOL... So we scanned his computer

and we scanned my computer and found something called Hackers Tool.. it

allowed Peer 2 Peer programs (I used WinMX when it was still there) to

invisibly use my computer as a temporary storage device as the files

moved through from one computer to another.. that's how they got there..

Then of course we got terribly busy.. finally got a date for getting

this thing setup.. of March 26th.. So I think we started packing up, and

I know we came and watched the day they did set it up, and I nearly had

a heart attack when the lower side fell off the jacks and I thought it

was going to roll into the neighbors yard!... The tub in my master bath,

doesn't seal and won't hold water.. so I suspect that when it fell off

the jacks, it pulled a pipe loose somewhere underneath..

Things just got crazier and crazier.. I think I had to reformat my

machine to completely rid myself of the virus.. and till we got settled

in, and had the computers hooked up was quite awhile, and I had lost

EVERYTHING and ALL my addresses in my address book...

We won't even go into the nightmare of getting my internet hooked up..

oh.. well maybe we will... since Verizon did such an absolutely lousy

job of it.. I called them in January, to set up the move date, though I

didn't have the move date yet.. I was told that the order was placed,

without a date and that all I had to do was call them back a couple of

days BEFORE we were ready and they'd be there the DAY we set the house

up to hook up my phone AND my DSL.... We stayed in this place the first

couple of nights.. with a kerosene heater to keep us warm and NO water..

but I wasn't able to get homeowners on it immediately after setup.. and

I was afraid someone would torch it or something with us not being here,

and having NO insurance.. I'd be SOL... We spent a weekend here.. till

the insurance was in force on Monday.. then I didn't have to worry any

more.. So we went back to the apartment..

Verizon didn't show up when they were supposed to.. they had me sit here

ALL day.. from 7 a.m. till 7 p.m. that night.. though I called them

around noonish, when they hadn't arrived at the first designated time,

to be told that they would be here before 3... then at around 3.. I

called again to be told that they were running behind but by 7 they'd be

here.. at 7... they finally told that they weren't coming that day...

Needless to say that I WAS livid...when they did actually get here was

somewhere around April 21st... and then the phone didn't work, and the

guy said it was inside wiring.. cause his lines were all good.. uh huh..

right.. turned out the line he laid was had a break in it somewhere..

but we didn't have time right then to mess with it.. I got 50ft

telephone line and plugged it into the box on the pole and ran it

through the front door.. we HAD to have a phone, but didn't have time to

fix it right away.. 's sister had been hospitalized with pneumonia,

so I needed to have a phone available.. as it was we missed the call

where they took her back to the hospital on the night of the 20th,

because she had stopped breathing in the middle of the night.. She

passed away then on the 24th of April.. so we were quite busy with ALL

of the moving (trying to get everything done, with me being able to do

very little).. we didn't actually get fully moved in until like the 2nd

week of May... but have been here since then...

But since I lost my address book, and since everything was such a mess

around here.. and all hell broke loose for that period of time.. I

didn't get back to the group right away.. and then I fried a video slot

in the 1st computer... and just not too long ago I fried the video slot

in 's computer (which he had given me, and jury rigged a compaq that

was here for his use.. since all he does is play a game or two).... By

the time I would get situated and start looking for the group again, the

list would overwhelm me... or something would distract me and I'd forget

again for a bit...

Well the other day I decided that I WAS going to find this group again

if it meant sitting all day and all night going through group by group

until I found the right one.. I remembered " wobbletowalk " ... should have

just emailed you and asked huh? Well sometimes I'm not the brightest

bulb in the pack.. But I found you guys, and here I am again.. to

brighten your days.. or at least make you moan " Oh no.. not her

again!!! " ... LOL

Talk to you soon.. it's time for my honey to get home from work, and I

haven't finished the dishes yet.. lol [had to get my nap in there this

afternoon].. LOL

Take Care

})onna

Sharon Marsden wrote:

>

>

> I checked and your last post to the group was March 8, 2004. It was a

> warning not to open anything from you because you had gotten a computer

> virus. Is that what led to your computer problems? I remember you

> talking about the double-wide and some of the problems getting it set up.

>

> So, what's been happening with me, you say? Oh lets see..... We sold

> our farm in northern Arizona in Sept. '04 and left for Alaska the end of

> that month. The " we " is me, my 34 y/o son , his wife , and

> their 4 children. And our 6 large dogs and our 4 cats (now 7 cats). lol

> In Alaska we lived in a big drafty cabin on 40 acres back in the

> woods. We were 2 miles from the road, off grid, got our water from our

> creek and had an outhouse. We lived a very spartan life, heated with

> an old wood stove... etc. We finally got an ARGO (a tracked vehicle)

> for getting in and out of the property and out to the road. But my

> first trip in was on a 4-wheeler, through the snow and ice. The 4

> wheeler broke a month later. After that all trips out for supplies and

> mail were by and hiking the 2 miles each way, each towing a

> sled loaded with provisions until we got the ARGO in January 05. It was

> beautiful and serene and I did love it there. I wasn't crazy about the

> long dark days in the deep of winter though What I didn't like was

> being so far away from Challis and my grandkids in Arizona. I decided

> my heart belongs in Arizona and we've been back here for a year. So now

> we are living in the desert but looking for land back up in cooler

> northern Arizona so we can start over building a new little homestead

> farm. If you would like to see some photos of our Alaska life:

> http://s22.photobucket.com/albums/b335/dorightranch/

> <http://s22.photobucket.com/albums/b335/dorightranch/>

>

> Since we had no electricity in Alaska I wasn't able to keep up with this

> MS group. My daughter, Challis, took over the group for me during the

> time I was gone. I mentioned you to her when you rejoined and I told

> her " You'll like Donna! " Challis has MS symptoms but no dx yet.

>

> MS-wise I have declined since I've been back in Arizona. I've gone

> through a year of severe nocturnal leg pain that nothing would help.

> Finally Cymbalta took the pain down 50%. Now I'm on my second month of

> LDN (Low Dose Naltrexone). I am feeling better because of the LDN and

> it has had a positive effect on my leg pain bringing the pain down to 10

> to 20% of what it was a year ago. I just saw my neuro yesterday and I

> asked him to increase the LDN dose from 3 mg. to 3.5 mg.

>

> Well, that's me in a " nutshell " ... so to speak.

>

> hugs)))

> Sharon

[Guest guest]

Wow! Allow me to introduce myself then since your last

post was the month before I was diagnosed...

*ahem*

My name is Akiba. I am 52, married to Rob, 41, Mother

to Robbin, 9.

I live in West-by-Gawds-Virginia, for no particular

reason. Knowing us, that will probably change soon, my

hubby and I seem to have an annual migration, and

we've been in this wonderful home for almost a year. I

don't want to move, but our lease will be up next

month and he's (the landlord)going to want to put us

on month-to-month and I don't like the insecurity of

that. He told us at the beginning that he puts

everyone on that after the first year, so I don't

think we'll be an exception.

We have chickens and rabbits and 3 cats, 2 guinea hens

and 1 guinea pig. No partridges. No pear trees,

either.

I was diagnosed on April Fool's day, 2004. I found out

I was pregnant at 42 on...April Fool's day, 1996. One

really good, and the other? Also good as it brought me

to this group.

I do not take any of the C.R.A.B drugs, but manage my

MS with supplements, LDN and BVT.

*phew* I guess that's it for now...can you post a bit

of an intro for those of us that post-date your last

entry?

Blessings

Akiba

--- Donna wrote:

> Oh geee.. it has been a long time.. and I seem to

> remember some sort of

> virus... oh and I'll just bet it was that hacker

> something or other..

> And I found it when we went to switch out hard

> drives on computers. <snip>

Peace and Blessings

~*~ Akiba ~*~

Pragmatic Visionary

& Eternal Optimist!

http://yodamamma.blogspot.com/

http://www.solay-twinflames.com

__________________________________________________

[Guest guest]

Thanks for sharing your experiences Donna. I am both hopeful and

apprehensive about starting on treatment.

Just trying to take it one day at a time at this point!

Kim

> > Welcome back Donna!

> >

> > I am new to the group and new MSer. I was just diagnosed in the

> > last few weeks and I am awaiting assessment and treatment

> > recommendations. It seems you have been through the ringer with

the

> > different treatments. I am inspired by your courage and

commitment

> > wow three years with flu symptoms!!!

> >

> > I look forward to getting to know you and the other members in

the

> > community.

> >

> > Kim from Ontario, Canada

> > Mom to Jenna 14, 10 and our Border Collie

> > Casey 4

>

[Guest guest]

Sure Can Akiba

I am 48 years old, way-more-than-significant-other to , 56. I had

two sons until May 30th of this year, when my oldest, or better

known to all as " Bud " , was killed in a head on collison. He would have

been 32 in October. My youngest Earl will be 25 on February 18th.

I live just north of that Manson-Nixon line here in Penciltucky, just

southeast of Pittsburgh. So you and I are neighbors of sorts. and I

will have been together for 7 years on February 1st, and it still seems

like yesterday.. Guess that's a good thing. I've never actually know a

man like before. He takes such very good care of me.. cooks,

cleans, does laundry AND goes to work 40 plus hours a week.. And he

still finds time to give me all the love and attention that I need. LOL

I'm seven years now, in the area where we live, three in this home, 4

two blocks down the street. This is the little coal mining " patch " town

where grew up. It's quiet... 'cept for the quad next door when I'm

still trying to sleep.. LOL.

and I have 3, no 4 other children, sort of... We have 3 parrots and

1 boxer. You can see our parrots at an old very outdated webpage that I

created here: http://donnaisalways.home.comcast.net/ Though our little

green goober has taken to plucking and no longer has any chest feathers,

and very few shoulder feathers.. He got to be breeding age, and turned

hormonal.. or possibly the move to a new home along with adding the

boxer to the family... not sure what exactly, or what combination of

events, caused him to start plucking.. but he's still doing it though we

try hard to " ignore " it.. it's what you're supposed to do, otherwise

they figure they have permission to keep doing it.. We're also not

allowed to clip his flight feathers because that also tells him it's

okay for him to pluck his own feathers... Oh but he is still the little

chatterbox...and quiet funny.. He and Roxie have taken to trying to

visit with the dog.. Joe flies out.. Roxie just walks out of the bird room..

We don't have any partridges either, but we do have a pear tree, and we

cut down the apple tree to get this house into the ONLY spot they could

put it in.. Some kind of ordinances about being so many feet off

property lines and away from the road.. and then we got this wonderful

main electric line of some sort running across the property that you

can't build anything under according the electric company standards...

and oh.. well they'll move it off our property.. but we'd have to pay

for it... and get permission to move it on the neighbors properties as

well.... and pay for that too... Guess that's why would like to

move to Alaska... LOL.. and I showed him the pictures of the grizzly

bear paw print AND the wolf print.... told him NO WAY JOSE... his little

pea shooter won't handle something like that.. LOL.. AND he doesn't hunt

anymore.. he said we could still move there... but he'd get a BIGGER

GUN.. He seems to think there's a town or village or something up there

where they will pipe in cable to us.. LOL...

Okay, now for the rest of the stuff...

I was diagnosed in August of 2000. I was pretty sure that I had it a few

years before that, when a friend of mine, who does have the MonSter, and

I discussed symptoms that I'd had over the years.. He suspected it long

before I even brought up the subject.. go figure...

I started on Avonex in September of 2000, and immediately starting

telling everyone how great it was, and how if this was all there was to

it.. sticking myself with a needle once a week.. it would be a piece of

cake... In October the side-effects HIT and they hit hard.. I'd have the

flu symptoms for five or six days.. just start feeling better when it

was time for the next injection.. my neuro, and she was a fantastic

neurologist, said to give it time, and work with it, that they should go

away in a few months.. Didn't happen... I did managed to figure out how

to get them down to the normal 24 to 36 hours though.. but continued to

take the Avonex for 4 years...

I was also on an Lexapro, Baclofen, Provigil, Ditropan & Xanax (Only for

stressful situations)... Once I lost my job, I could see no reason to

stay on the Ditropan, when there was a bathroom right around the corner,

so I stopped that.. didn't think that it was necessary to take the

Baclofen on a daily basis because I didn't need it every day.. so I

stopped that unless needed, and the Lexapro I stopped as well, I think I

just forgot to take that... lol

I stopped seeing my neurologist at the same time I stopped taking the

Avonex.. He wouldn't add Copaxone to the Avonex to take up the slack

where I knew the Avonex wasn't working anymore, and all that good stuff..

Well, when I called his office the morning after my son was killed to

ask for a refill on the Xanax, explaining why.. the receptionist talked

to the doc right away.. She came back and told me that he would call in

the Xanax for me, but that he would NOT call in any other prescriptions

for me from that point on, because I hadn't seen him in over 2 years..

So I had to make an appointment and go see him... The new MRI shows that

I have new lesions bilaterally and so it was quite apparent that I

needed to be taking something, and he broke down and gave me the script

for Copaxone.. I wouldn't take any of his other suggestions.. He didn't

suggest LDN or BVT.. he wanted Novantrone or on of the other interferons..

So here I am.. my life finally settled down.. well maybe it didn't, but

at least I managed to find the group again, and am back to stir things

up from time to time...

Hope that helps you get to know me a little better... Some people think

I'm nuts because of the way I handle having MS.. but the truth is.. I

can either laugh at it.. or sit down and cry.. I think I'd rather laugh

at it...

|)onna

webpages

http://donnaisalways.home.comcast.net - old pages about me, & birds

http://mybuddymyfriend.home.comcast.net - memorial page to my son

Akiba Michels wrote:

>

> Wow! Allow me to introduce myself then since your last

> post was the month before I was diagnosed...

> *ahem*

> My name is Akiba. I am 52, married to Rob, 41, Mother

> to Robbin, 9.

> I live in West-by-Gawds-Virginia, for no particular

> reason. Knowing us, that will probably change soon, my

> hubby and I seem to have an annual migration, and

> we've been in this wonderful home for almost a year. I

> don't want to move, but our lease will be up next

> month and he's (the landlord)going to want to put us

> on month-to-month and I don't like the insecurity of

> that. He told us at the beginning that he puts

> everyone on that after the first year, so I don't

> think we'll be an exception.

> We have chickens and rabbits and 3 cats, 2 guinea hens

> and 1 guinea pig. No partridges. No pear trees,

> either.

> I was diagnosed on April Fool's day, 2004. I found out

> I was pregnant at 42 on...April Fool's day, 1996. One

> really good, and the other? Also good as it brought me

> to this group.

> I do not take any of the C.R.A.B drugs, but manage my

> MS with supplements, LDN and BVT.

> *phew* I guess that's it for now...can you post a bit

> of an intro for those of us that post-date your last

> entry?

> Blessings

> Akiba

[Guest guest]

I'm so sorry to hear about your son. My brother lost his son some years back and I know how hard that was on him and the boy's siblings. I am really, truly sad for you. hugs))))))Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford Re: Rejoining after a long absence.........

Sure Can Akiba

I am 48 years old, way-more-than- significant- other to , 56. I had

two sons until May 30th of this year, when my oldest, or better

known to all as "Bud", was killed in a head on collison. He would have

been 32 in October. My youngest Earl will be 25 on February 18th.

I live just north of that Manson-Nixon line here in Penciltucky, just

southeast of Pittsburgh. So you and I are neighbors of sorts. and I

will have been together for 7 years on February 1st, and it still seems

like yesterday.. Guess that's a good thing. I've never actually know a

man like before. He takes such very good care of me.. cooks,

cleans, does laundry AND goes to work 40 plus hours a week.. And he

still finds time to give me all the love and attention that I need. LOL

I'm seven years now, in the area where we live, three in this home, 4

two blocks down the street. This is the little coal mining "patch" town

where grew up. It's quiet... 'cept for the quad next door when I'm

still trying to sleep.. LOL.

and I have 3, no 4 other children, sort of... We have 3 parrots and

1 boxer. You can see our parrots at an old very outdated webpage that I

created here: http://donnaisalway s.home.comcast. net/ Though our little

green goober has taken to plucking and no longer has any chest feathers,

and very few shoulder feathers.. He got to be breeding age, and turned

hormonal.. or possibly the move to a new home along with adding the

boxer to the family... not sure what exactly, or what combination of

events, caused him to start plucking.. but he's still doing it though we

try hard to "ignore" it.. it's what you're supposed to do, otherwise

they figure they have permission to keep doing it.. We're also not

allowed to clip his flight feathers because that also tells him it's

okay for him to pluck his own feathers... Oh but he is still the little

chatterbox.. .and quiet funny.. He and Roxie have taken to trying to

visit with the dog.. Joe flies out.. Roxie just walks out of the bird room..

We don't have any partridges either, but we do have a pear tree, and we

cut down the apple tree to get this house into the ONLY spot they could

put it in.. Some kind of ordinances about being so many feet off

property lines and away from the road.. and then we got this wonderful

main electric line of some sort running across the property that you

can't build anything under according the electric company standards...

and oh.. well they'll move it off our property.. but we'd have to pay

for it... and get permission to move it on the neighbors properties as

well.... and pay for that too... Guess that's why would like to

move to Alaska... LOL.. and I showed him the pictures of the grizzly

bear paw print AND the wolf print.... told him NO WAY JOSE... his little

pea shooter won't handle something like that.. LOL.. AND he doesn't hunt

anymore.. he said we could still move there... but he'd get a BIGGER

GUN.. He seems to think there's a town or village or something up there

where they will pipe in cable to us.. LOL...

Okay, now for the rest of the stuff...

I was diagnosed in August of 2000. I was pretty sure that I had it a few

years before that, when a friend of mine, who does have the MonSter, and

I discussed symptoms that I'd had over the years.. He suspected it long

before I even brought up the subject.. go figure...

I started on Avonex in September of 2000, and immediately starting

telling everyone how great it was, and how if this was all there was to

it.. sticking myself with a needle once a week.. it would be a piece of

cake... In October the side-effects HIT and they hit hard.. I'd have the

flu symptoms for five or six days.. just start feeling better when it

was time for the next injection.. my neuro, and she was a fantastic

neurologist, said to give it time, and work with it, that they should go

away in a few months.. Didn't happen... I did managed to figure out how

to get them down to the normal 24 to 36 hours though.. but continued to

take the Avonex for 4 years...

I was also on an Lexapro, Baclofen, Provigil, Ditropan & Xanax (Only for

stressful situations). .. Once I lost my job, I could see no reason to

stay on the Ditropan, when there was a bathroom right around the corner,

so I stopped that.. didn't think that it was necessary to take the

Baclofen on a daily basis because I didn't need it every day.. so I

stopped that unless needed, and the Lexapro I stopped as well, I think I

just forgot to take that... lol

I stopped seeing my neurologist at the same time I stopped taking the

Avonex.. He wouldn't add Copaxone to the Avonex to take up the slack

where I knew the Avonex wasn't working anymore, and all that good stuff..

Well, when I called his office the morning after my son was killed to

ask for a refill on the Xanax, explaining why.. the receptionist talked

to the doc right away.. She came back and told me that he would call in

the Xanax for me, but that he would NOT call in any other prescriptions

for me from that point on, because I hadn't seen him in over 2 years..

So I had to make an appointment and go see him... The new MRI shows that

I have new lesions bilaterally and so it was quite apparent that I

needed to be taking something, and he broke down and gave me the script

for Copaxone.. I wouldn't take any of his other suggestions. . He didn't

suggest LDN or BVT.. he wanted Novantrone or on of the other interferons. .

So here I am.. my life finally settled down.. well maybe it didn't, but

at least I managed to find the group again, and am back to stir things

up from time to time...

Hope that helps you get to know me a little better... Some people think

I'm nuts because of the way I handle having MS.. but the truth is.. I

can either laugh at it.. or sit down and cry.. I think I'd rather laugh

at it...

|)onna

webpages

http://donnaisalway s.home.comcast. net - old pages about me, & birds

http://mybuddymyfri end.home. comcast.net - memorial page to my son

Akiba Michels wrote:

>

> Wow! Allow me to introduce myself then since your last

> post was the month before I was diagnosed...

> *ahem*

> My name is Akiba. I am 52, married to Rob, 41, Mother

> to Robbin, 9.

> I live in West-by-Gawds- Virginia, for no particular

> reason. Knowing us, that will probably change soon, my

> hubby and I seem to have an annual migration, and

> we've been in this wonderful home for almost a year. I

> don't want to move, but our lease will be up next

> month and he's (the landlord)going to want to put us

> on month-to-month and I don't like the insecurity of

> that. He told us at the beginning that he puts

> everyone on that after the first year, so I don't

> think we'll be an exception.

> We have chickens and rabbits and 3 cats, 2 guinea hens

> and 1 guinea pig. No partridges. No pear trees,

> either.

> I was diagnosed on April Fool's day, 2004. I found out

> I was pregnant at 42 on...April Fool's day, 1996. One

> really good, and the other? Also good as it brought me

> to this group.

> I do not take any of the C.R.A.B drugs, but manage my

> MS with supplements, LDN and BVT.

> *phew* I guess that's it for now...can you post a bit

> of an intro for those of us that post-date your last

> entry?

> Blessings

> Akiba

__________________________________________________

[Guest guest]

Hey Donna-

I have the same problem with the Rebif. I take it out of the refrigerator 3 at a time and let them sit at room temp. That alleviates the stinging. This didn't happen to me the last time I was taking the Rebif though...the bruising at injection sites. I've always had a little redness at the site. Sometimes a little itching. Now, I'm bruising at the sites. I quit doing the shots in my legs because it left my legs pretty sore. Now, I just do them in the tummy and the back of my upper thigh.

Like you, I don't "keep track" of the sites. But, I figure as long as I keep rotating in a circular motion, (one thigh then, the other thigh then, one side of belly then the other side of belly) by the time I've done 4 shots, The first area should be healed enough to inject again. Each one of those sites has 4-6 injection areas where you can give your shot. So, you're not always giving the shot in the same place.

I'm sorry. I don't give directions very well, so you may not understand what I just said. That's really strange though, I'm pretty good at following directions.

My doctor's appointment is this coming Wednesday. I'm pretty stoked! I'm having a bunch of tests done on me. I really want to know where I stand with this. I've been so sick the past few years. I'm trying to pinpoint some of my symptoms. I've been living in a dump for the last 6 years, and I know it is mold infested. From some of the research I've been doing, it sounds as if mold poisoning can mimic MS symptoms. After the neurologist appt. I'm going to see a general practitioner. I feel like I am slowly dying. Nobody see's it because I don't look sick.

Because of my depression, and not being able to have it treated, I'm trying very hard to keep myself thinking positive. I'm so thankful for the 2 years of psychology I took. 'Course, I might look kind of funny talking to myself all the time, but at least I'm able to keep myself focused.

I know, I know. I'll let you go now....

Blessed be...

-- Re: Rejoining after a long absence.........

Greetings & Salutations Valene!I am very happy with the Copaxone.. just trying to figure out why certain injection sites have a reaction and others don't, but a week or so later, the ones that didn't do and the ones that did don't... I suppose that I should use the planner that Shared Solutions sent, and keep track of things.. but..... I forget.. yeah, we'll call it forgetfulness rather than laziness... LOLI hate to hear that you're having trouble with exacerbations.. I asked my neuro, before I quit seeing him those couple of years ago if my RRMS hadn't converted to SPMS.. he said no.. it was (I think he called it) Progressive Relapsing now.. (there are two versions.. Progressive Relapsing and Relapsing Progressive.. one of which only like 1% of people with MS have.. and that's not the version I have now).. well he said that's where he'd class it now, because I'm seeing slow but steady progression but I'm still having definite relapses...He was quite confusing in that.. because when I'd call on the phone to tell him I was having a "new" symptom/exacerbation he'd tell me that it wasn't.. cause exacerbations last for more than 48 hours.. well the one with lights flashing behind my eyes would have caused me to be committed IF it had lasted that long... You know those jagged splash type signs that you see on items that are on sale?... well I had a flashing light show going on it that shape even with my eyes closed, for a couple hours..I see the neuro again sometime in February..... I think... I know this because he only wrote my scripts for 4 or 5 months.. I know my anti-depressant only has one more refill on it.. good thing is.. his office WILL call a day or so before my appointment to remind me... Thank Goodness..Take care and take it easy.... talk to you soon|)OnnaValene wrote:> > (((Donna)))> Glad to see you back! And I'm glad to hear that you've found a treatment > that you can live with. I'll be going back to the neurologist Jan. 3rd > to have a bunch of new tests done also. I've had another of many flare > ups. I don't even get into remission good before I'm knocked down again. > Maybe it's not RRMS anymore? I don't know but eager to find out!> > Hope you had a wonderful Christmas! Talk to you soon! >

[Guest guest]

Valene,

Prayers coming your way for your tests.

Hugs

nne

Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.htmlBreastCancerStories.comhttp://www.breastcancerstories.com/content/view/433/161/Angel Feather Loomerwww.angelfeatherloomer.blogspot.comCheck out my other ornaments atwww.geocities.com/chucky5741/bcornament.htmlLots of info and gifts at:www.cancerclub.com

Re: Rejoining after a long absence.........

Greetings & Salutations Valene!I am very happy with the Copaxone.. just trying to figure out why certain injection sites have a reaction and others don't, but a week or so later, the ones that didn't do and the ones that did don't... I suppose that I should use the planner that Shared Solutions sent, and keep track of things.. but..... I forget.. yeah, we'll call it forgetfulness rather than laziness... LOLI hate to hear that you're having trouble with exacerbations.. I asked my neuro, before I quit seeing him those couple of years ago if my RRMS hadn't converted to SPMS.. he said no.. it was (I think he called it) Progressive Relapsing now.. (there are two versions.. Progressive Relapsing and Relapsing Progressive.. one of which only like 1% of people with MS have.. and that's not the version I have now).. well he said that's where he'd class it now, because I'm seeing slow but steady progression but I'm still having definite lapses...He was quite confusing in that.. because when I'd call on the phone to tell him I was having a "new" symptom/exacerbation he'd tell me that it wasn't.. cause exacerbations last for more than 48 hours.. well the one with lights flashing behind my eyes would have caused me to be committed IF it had lasted that long... You know those jagged splash type signs that you see on items that are on sale?... well I had a flashing light show going on it that shape even with my eyes closed, for a couple hours..I see the neuro again sometime in February..... I think... I know this because he only wrote my scripts for 4 or 5 months.. I know my anti-depressant only has one more refill on it.. good thing is.. his office WILL call a day or so before my appointment to remind me... Thank Goodness..Take care and take it easy.... talk to you soon|)OnnaValene wrote:> > (((Donna)))> Glad to see you back! And I'mgad to hear that you've found a treatment > that you can live with. I'll be going back to the neurologist Jan. 3rd > to have a bunch of new tests done also. I've had another of many flare > ups. I don't even get into remission good before I'm knocked down again. > Maybe it's not RRMS anymore? I don't know but eager to find out!> > Hope you had a wonderful Christmas! Talk to you soon! >

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.16.1/611 - Release Date: 12/31/2006

[Guest guest]

Thank you, nne;

Prayers are with you as well. Have a happy, happy New Year!!

http://360.yahoo.com/vallee45

-- Re: Rejoining after a long absence.........

Valene,

Prayers coming your way for your tests.

Hugs

nne

Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.htmlBreastCancerStories.comhttp://www.breastcancerstories.com/content/view/433/161/Angel Feather Loomerwww.angelfeatherloomer.blogspot.comCheck out my other ornaments atwww.geocities.com/chucky5741/bcornament.htmlLots of info and gifts at:www.cancerclub.com

Re: Rejoining after a long absence.........

Greetings & Salutations Valene!I am very happy with the Copaxone.. just trying to figure out why certain injection sites have a reaction and others don't, but a week or so later, the ones that didn't do and the ones that did don't... I suppose that I should use the planner that Shared Solutions sent, and keep track of things.. but..... I forget.. yeah, we'll call it forgetfulness rather than laziness... LOLI hate to hear that you're having trouble with exacerbations.. I asked my neuro, before I quit seeing him those couple of years ago if my RRMS hadn't converted to SPMS.. he said no.. it was (I think he called it) Progressive Relapsing now.. (there are two versions.. Progressive Relapsing and Relapsing Progressive.. one of which only like 1% of people with MS have.. and that's not the version I have now).. well he said that's where he'd class it now, because I'm seeing slow but steady progression but I'm still having definite lapses...He was quite confusing in that.. because when I'd call on the phone to tell him I was having a "new" symptom/exacerbation he'd tell me that it wasn't.. cause exacerbations last for more than 48 hours.. well the one with lights flashing behind my eyes would have caused me to be committed IF it had lasted that long... You know those jagged splash type signs that you see on items that are on sale?... well I had a flashing light show going on it that shape even with my eyes closed, for a couple hours..I see the neuro again sometime in February..... I think... I know this because he only wrote my scripts for 4 or 5 months.. I know my anti-depressant only has one more refill on it.. good thing is.. his office WILL call a day or so before my appointment to remind me... Thank Goodness..Take care and take it easy.... talk to you soon|)OnnaValene wrote:> > (((Donna)))> Glad to see you back! And I'mgad to hear that you've found a treatment > that you can live with. I'll be going back to the neurologist Jan. 3rd > to have a bunch of new tests done also. I've had another of many flare > ups. I don't even get into remission good before I'm knocked down again. > Maybe it's not RRMS anymore? I don't know but eager to find out!> > Hope you had a wonderful Christmas! Talk to you soon! >

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.16.1/611 - Release Date: 12/31/2006

[Guest guest]

Ohhh, Donna!!!

I'm sorry...I forgot to sign my last email. It was from me....

Val (The one who wouldn't remember her name if it was tattooed to her tongue.)

http://360.yahoo.com/vallee45

-- Re: Rejoining after a long absence.........

Greetings & Salutations Valene!I am very happy with the Copaxone.. just trying to figure out why certain injection sites have a reaction and others don't, but a week or so later, the ones that didn't do and the ones that did don't... I suppose that I should use the planner that Shared Solutions sent, and keep track of things.. but..... I forget.. yeah, we'll call it forgetfulness rather than laziness... LOLI hate to hear that you're having trouble with exacerbations.. I asked my neuro, before I quit seeing him those couple of years ago if my RRMS hadn't converted to SPMS.. he said no.. it was (I think he called it) Progressive Relapsing now.. (there are two versions.. Progressive Relapsing and Relapsing Progressive.. one of which only like 1% of people with MS have.. and that's not the version I have now).. well he said that's where he'd class it now, because I'm seeing slow but steady progression but I'm still having definite relapses...He was quite confusing in that.. because when I'd call on the phone to tell him I was having a "new" symptom/exacerbation he'd tell me that it wasn't.. cause exacerbations last for more than 48 hours.. well the one with lights flashing behind my eyes would have caused me to be committed IF it had lasted that long... You know those jagged splash type signs that you see on items that are on sale?... well I had a flashing light show going on it that shape even with my eyes closed, for a couple hours..I see the neuro again sometime in February..... I think... I know this because he only wrote my scripts for 4 or 5 months.. I know my anti-depressant only has one more refill on it.. good thing is.. his office WILL call a day or so before my appointment to remind me... Thank Goodness..Take care and take it easy.... talk to you soon|)OnnaValene wrote:> > (((Donna)))> Glad to see you back! And I'm glad to hear that you've found a treatment > that you can live with. I'll be going back to the neurologist Jan. 3rd > to have a bunch of new tests done also. I've had another of many flare > ups. I don't even get into remission good before I'm knocked down again. > Maybe it's not RRMS anymore? I don't know but eager to find out!> > Hope you had a wonderful Christmas! Talk to you soon! >

[Guest guest]

Hey donna.thanks for sharing your story.I enjoyed reading it.sorry for what you

have gone threw,but you seem like you have a lovely life.my name is cassy.im not

yet dx'd.I found this group when I thought I had ms.I have been sick for over 3

yrs. Mis diagnosed twice.switched docs 3 times.and have had a million tests.so

far im really sick with no dx.oh but im not crazy.lol.have been threw all that

hell.my neuro believes I have devics disease.a rare neurological disease.im

waiting to be seen by a specialist for a second opinion.Im gona go for now I

have been sick with the flu,and now it is effecting all my other symptoms.im

glad you found us again,and look forward to getting to know you.hugs,cassy

[wobbletowalk@...] wrote:

I'm so sorry to hear about your son. My brother lost his son some years back

and I know how hard that was on him and the boy's siblings. I am really, truly

sad for you.

hugs))))))

Sharon

If the government is big enough to give you everything you want, it

is big enough to take away everything you have. - Gerald Ford

Re: Rejoining after a long absence.........

Sure Can Akiba

I am 48 years old, way-more-than- significant- other to , 56. I had

two sons until May 30th of this year, when my oldest, or better

known to all as " Bud " , was killed in a head on collison. He would have

been 32 in October. My youngest Earl will be 25 on February 18th.

I live just north of that Manson-Nixon line here in Penciltucky, just

southeast of Pittsburgh. So you and I are neighbors of sorts. and I

will have been together for 7 years on February 1st, and it still seems

like yesterday.. Guess that's a good thing. I've never actually know a

man like before. He takes such very good care of me.. cooks,

cleans, does laundry AND goes to work 40 plus hours a week.. And he

still finds time to give me all the love and attention that I need. LOL

I'm seven years now, in the area where we live, three in this home, 4

two blocks down the street. This is the little coal mining " patch " town

where grew up. It's quiet... 'cept for the quad next door when I'm

still trying to sleep.. LOL.

and I have 3, no 4 other children, sort of... We have 3 parrots and

1 boxer. You can see our parrots at an old very outdated webpage that I

created here: http://donnaisalway s.home.comcast. net/ Though our little

green goober has taken to plucking and no longer has any chest feathers,

and very few shoulder feathers.. He got to be breeding age, and turned

hormonal.. or possibly the move to a new home along with adding the

boxer to the family... not sure what exactly, or what combination of

events, caused him to start plucking.. but he's still doing it though we

try hard to " ignore " it.. it's what you're supposed to do, otherwise

they figure they have permission to keep doing it.. We're also not

allowed to clip his flight feathers because that also tells him it's

okay for him to pluck his own feathers... Oh but he is still the little

chatterbox.. .and quiet funny.. He and Roxie have taken to trying to

visit with the dog.. Joe flies out.. Roxie just walks out of the bird room..

We don't have any partridges either, but we do have a pear tree, and we

cut down the apple tree to get this house into the ONLY spot they could

put it in.. Some kind of ordinances about being so many feet off

property lines and away from the road.. and then we got this wonderful

main electric line of some sort running....

[Guest guest]

Donna, sympathy and love to you and all in your family who have felt this loss,

more love, more n

Re: Rejoining after a long absence.........

Sure Can AkibaI am 48 years old, way-more-than-significant-other to , 56. I had two sons until May 30th of this year, when my oldest, or better known to all as "Bud", was killed in a head on collison. He would have been 32 in October. My youngest Earl will be 25 on February 18th.I live just north of that Manson-Nixon line here in Penciltucky, just southeast of Pittsburgh. So you and I are neighbors of sorts. and I will have been together for 7 years on February 1st, and it still seems like yesterday.. Guess that's a good thing. I've never actually know a man like before. He takes such very good care of me.. cooks, cleans, does laundry AND goes to work 40 plus hours a week.. And he still finds time to give me all the love and attention that I need. LOLI'm seven years now, in the area where we live, three in this home, 4 two blocks down the street. This is the little coal mining "patch" town where grew up. It's quiet... 'cept for the quad next door when I'm still trying to sleep.. LOL. and I have 3, no 4 other children, sort of... We have 3 parrots and 1 boxer. You can see our parrots at an old very outdated webpage that I created here: http://donnaisalways.home.comcast.net/ Though our little green goober has taken to plucking and no longer has any chest feathers, and very few shoulder feathers.. He got to be breeding age, and turned hormonal.. or possibly the move to a new home along with adding the boxer to the family... not sure what exactly, or what combination of events, caused him to start plucking.. but he's still doing it though we try hard to "ignore" it.. it's what you're supposed to do, otherwise they figure they have permission to keep doing it.. We're also not allowed to clip his flight feathers because that also tells him it's okay for him to pluck his own feathers... Oh but he is still the little chatterbox...and quiet funny.. He and Roxie have taken to trying to visit with the dog.. Joe flies out.. Roxie just walks out of the bird room..We don't have any partridges either, but we do have a pear tree, and we cut down the apple tree to get this house into the ONLY spot they could put it in.. Some kind of ordinances about being so many feet off property lines and away from the road.. and then we got this wonderful main electric line of some sort running across the property that you can't build anything under according the electric company standards... and oh.. well they'll move it off our property.. but we'd have to pay for it... and get permission to move it on the neighbors properties as well.... and pay for that too... Guess that's why would like to move to Alaska... LOL.. and I showed him the pictures of the grizzly bear paw print AND the wolf print.... told him NO WAY JOSE... his little pea shooter won't handle something like that.. LOL.. AND he doesn't hunt anymore.. he said we could still move there... but he'd get a BIGGER GUN.. He seems to think there's a town or village or something up there where they will pipe in cable to us.. LOL...Okay, now for the rest of the stuff...I was diagnosed in August of 2000. I was pretty sure that I had it a few years before that, when a friend of mine, who does have the MonSter, and I discussed symptoms that I'd had over the years.. He suspected it long before I even brought up the subject.. go figure...I started on Avonex in September of 2000, and immediately starting telling everyone how great it was, and how if this was all there was to it.. sticking myself with a needle once a week.. it would be a piece of cake... In October the side-effects HIT and they hit hard.. I'd have the flu symptoms for five or six days.. just start feeling better when it was time for the next injection.. my neuro, and she was a fantastic neurologist, said to give it time, and work with it, that they should go away in a few months.. Didn't happen... I did managed to figure out how to get them down to the normal 24 to 36 hours though.. but continued to take the Avonex for 4 years...I was also on an Lexapro, Baclofen, Provigil, Ditropan & Xanax (Only for stressful situations)... Once I lost my job, I could see no reason to stay on the Ditropan, when there was a bathroom right around the corner, so I stopped that.. didn't think that it was necessary to take the Baclofen on a daily basis because I didn't need it every day.. so I stopped that unless needed, and the Lexapro I stopped as well, I think I just forgot to take that... lolI stopped seeing my neurologist at the same time I stopped taking the Avonex.. He wouldn't add Copaxone to the Avonex to take up the slack where I knew the Avonex wasn't working anymore, and all that good stuff..Well, when I called his office the morning after my son was killed to ask for a refill on the Xanax, explaining why.. the receptionist talked to the doc right away.. She came back and told me that he would call in the Xanax for me, but that he would NOT call in any other prescriptions for me from that point on, because I hadn't seen him in over 2 years.. So I had to make an appointment and go see him... The new MRI shows that I have new lesions bilaterally and so it was quite apparent that I needed to be taking something, and he broke down and gave me the script for Copaxone.. I wouldn't take any of his other suggestions.. He didn't suggest LDN or BVT.. he wanted Novantrone or on of the other interferons..So here I am.. my life finally settled down.. well maybe it didn't, but at least I managed to find the group again, and am back to stir things up from time to time...Hope that helps you get to know me a little better... Some people think I'm nuts because of the way I handle having MS.. but the truth is.. I can either laugh at it.. or sit down and cry.. I think I'd rather laugh at it...|)onnawebpageshttp://donnaisalways.home.comcast.net - old pages about me, & birdshttp://mybuddymyfriend.home.comcast.net - memorial page to my sonAkiba Michels wrote:> > Wow! Allow me to introduce myself then since your last> post was the month before I was diagnosed...> *ahem*> My name is Akiba. I am 52, married to Rob, 41, Mother> to Robbin, 9.> I live in West-by-Gawds-Virginia, for no particular> reason. Knowing us, that will probably change soon, my> hubby and I seem to have an annual migration, and> we've been in this wonderful home for almost a year. I> don't want to move, but our lease will be up next> month and he's (the landlord)going to want to put us> on month-to-month and I don't like the insecurity of> that. He told us at the beginning that he puts> everyone on that after the first year, so I don't> think we'll be an exception.> We have chickens and rabbits and 3 cats, 2 guinea hens> and 1 guinea pig. No partridges. No pear trees,> either.> I was diagnosed on April Fool's day, 2004. I found out> I was pregnant at 42 on...April Fool's day, 1996. One> really good, and the other? Also good as it brought me> to this group.> I do not take any of the C.R.A.B drugs, but manage my> MS with supplements, LDN and BVT.> *phew* I guess that's it for now...can you post a bit> of an intro for those of us that post-date your last> entry?> Blessings> Akiba

[Guest guest]

Thank you so much Sharon,

It has been a rough row to hoe for sure... I don't know where the last

six months went for sure because it seems to have just disappeared.. I

think that his death was another one of the reasons that I finally made

it a definite point to set down and find you guys again.. It's so very

very very important to keep in touch with those you care about and those

who care about you..

Thanks again for caring

|)onna

Sharon Marsden wrote:

>

> I'm so sorry to hear about your son. My brother lost his son some years

> back and I know how hard that was on him and the boy's siblings. I am

> really, truly sad for you.

>

> hugs))))))

>

> Sharon

>

[Guest guest]

Thank you for your kind words Cassy,

And you are right, I do have a wonderful life now (other than the MS and

loss of my son)... Fortunately for me, is a fabulous person and he

takes very very good care of me...

Isn't it just the pits when you know you're sick and you get the feeling

that doctors as well as other people think you're either faking or are

imagining it? I had a couple doctors over the years before my diagnosis

that I think thought I was a little loose, when the tests came back

negative... Ya know.. complained about numbness in my hands and

fingers... test for carpal tunnel came back negative.. though they never

explored any further to find out why... The numbness in my big toe on my

right foot.. that could have been and was explained away as nerve

damaged done during a bone graft after my broken ankle didn't heal

correctly.. that was logical.. and it was only my big toe... for

awhile.... lol..

I'm hoping and saying a little prayer that all goes well for you with

your 2nd opinion.... and I hope you get over the flu quite quickly with

no lasting effects...

Take care....

|)onna

cassandra workmn wrote:

>

> Hey donna.thanks for sharing your story.I enjoyed reading it.sorry for

> what you have gone threw,but you seem like you have a lovely life.my

> name is cassy.im not yet dx'd.I found this group when I thought I had

> ms.I have been sick for over 3 yrs. Mis diagnosed twice.switched docs 3

> times.and have had a million tests.so far im really sick with no dx.oh

> but im not crazy.lol.have been threw all that hell.my neuro believes I

> have devics disease.a rare neurological disease.im waiting to be seen by

> a specialist for a second opinion.Im gona go for now I have been sick

> with the flu,and now it is effecting all my other symptoms.im glad you

> found us again,and look forward to getting to know you.hugs,cassy

>

[Guest guest]

Thank you for your kind words n,

It does help to know that you have other people to reach out to, and

know they support you during a time of grief (and when you might just

get a little crazy from time to time)...

Thanks again

|)onna

n Rojas wrote:

>

> Donna, sympathy and love to you and all in your family who have felt

> this loss,

> more love, more n

[Guest guest]

I cannot even Imagine losing a child! There are no

words for the pain that must be!

I was also tested for carpal BTW, and came back pos.

Dr's of course wanted to go right in, TG Challis told

me about bromelian, I take it daily (ok, except for

yesterday, I didn't even brave LDN yesterday!) and it

has almost totally cured it. Now I also hear about

ginger root, I haven't tried it yet, that's next :-)

HUGS

Akiba

--- Donna wrote:

> Thank you for your kind words Cassy,

>

> And you are right, I do have a wonderful life now

> (other than the MS and

> loss of my son)... Fortunately for me, is a

> fabulous person and he

> takes very very good care of me...

>

> Isn't it just the pits when you know you're sick and

> you get the feeling

> that doctors as well as other people think you're

> either faking or are

> imagining it? I had a couple doctors over the years

> before my diagnosis

> that I think thought I was a little loose, when the

> tests came back

> negative... Ya know.. complained about numbness in

> my hands and

> fingers... test for carpal tunnel came back

> negative.. though they never

> explored any further to find out why... The numbness

> in my big toe on my

> right foot.. that could have been and was explained

> away as nerve

> damaged done during a bone graft after my broken

> ankle didn't heal

> correctly.. that was logical.. and it was only my

> big toe... for

> awhile.... lol..

>

> I'm hoping and saying a little prayer that all goes

> well for you with

> your 2nd opinion.... and I hope you get over the flu

> quite quickly with

> no lasting effects...

>

> Take care....

> |)onna

>

>

>

> cassandra workmn wrote:

> >

> > Hey donna.thanks for sharing your story.I enjoyed

> reading it.sorry for

> > what you have gone threw,but you seem like you

> have a lovely life.my

> > name is cassy.im not yet dx'd.I found this group

> when I thought I had

> > ms.I have been sick for over 3 yrs. Mis diagnosed

> twice.switched docs 3

> > times.and have had a million tests.so far im

> really sick with no dx.oh

> > but im not crazy.lol.have been threw all that

> hell.my neuro believes I

> > have devics disease.a rare neurological disease.im

> waiting to be seen by

> > a specialist for a second opinion.Im gona go for

> now I have been sick

> > with the flu,and now it is effecting all my other

> symptoms.im glad you

> > found us again,and look forward to getting to know

> you.hugs,cassy

> >

>

>

Peace and Blessings

~*~ Akiba ~*~

Pragmatic Visionary

& Eternal Optimist!

http://yodamamma.blogspot.com/

http://www.solay-twinflames.com

__________________________________________________

[Guest guest]

Well I know that a little ginger brandy is good for warming a person up

when they are human Popsicles!!!.. And I know they use ginger on a horse

to get it to hold it's tail in air during shows... (but it's illegal to

do that).. lol.. so what can or does it do for us with MS?

|)onna

Akiba Michels wrote:

>

> I cannot even Imagine losing a child! There are no

> words for the pain that must be!

> I was also tested for carpal BTW, and came back pos.

> Dr's of course wanted to go right in, TG Challis told

> me about bromelian, I take it daily (ok, except for

> yesterday, I didn't even brave LDN yesterday!) and it

> has almost totally cured it. Now I also hear about

> ginger root, I haven't tried it yet, that's next :-)

> HUGS

> Akiba

[Guest guest]

It's for arthritis, which way too many of us also

have...a friend on another list (a shaman's list

wouldn't ya know LOL?) told me about it, she takes it

and it helps immensely...I figure why not? Ginger is

good for you no matter what...

Hugs

Akiba

--- Donna wrote:

> Well I know that a little ginger brandy is good for

> warming a person up

> when they are human Popsicles!!!.. And I know they

> use ginger on a horse

> to get it to hold it's tail in air during shows...

> (but it's illegal to

> do that).. lol.. so what can or does it do for us

> with MS?

>

> |)onna

>

>

> Akiba Michels wrote:

> >

> > I cannot even Imagine losing a child! There are no

> > words for the pain that must be!

> > I was also tested for carpal BTW, and came back

> pos.

> > Dr's of course wanted to go right in, TG Challis

> told

> > me about bromelian, I take it daily (ok, except

> for

> > yesterday, I didn't even brave LDN yesterday!) and

> it

> > has almost totally cured it. Now I also hear about

> > ginger root, I haven't tried it yet, that's next

> :-)

> > HUGS

> > Akiba

>

>

Peace and Blessings

~*~ Akiba ~*~

Pragmatic Visionary

& Eternal Optimist!

http://yodamamma.blogspot.com/

http://www.solay-twinflames.com

__________________________________________________