Re: Glad I found you

[Guest guest]

Hello Bacchi,

I'm 32 and I was dxed in 2001 with relapsing remitting MS while I was trying to graduate from college. I live in Michigan where we're getting heat and humidity too right now. I have taken a wide variety of meds for symptoms and so has everyone else here so any discussion you want to have about them feel free. I'm personally on Copaxone which is a shot per day but I do nicely on it. I find though that MS drugs tend to affect each MSer differently so it's all about hopefully finding the right fit. I'm an art teacher and I will be working full-time come September. Right now I'm off for the summer and dealing with some family crises. This is a great place to vent because good people will listen. I hope you will get enjoyment from this group. I always do.

Glad to meet you,

Amy

From: MSersLife [mailto:MSersLife ] On Behalf Of msbacchiSent: Friday, July 18, 2008 9:56 AMTo: MSersLife Subject: Glad I found you

Hi everyone.Thanks for welcoming me into your group.I'm 47, divorced mom of 3 daughters. My youngest will be moving away to college soon. I'm also mom to 2 pugs. I live in south Alabama--the land of unbearable heat and 100% humidity. I was diagnosed in 2004--not really sure how long I've really had MS, probably since the mid 80's.I've read all the "official" MS info pages but I'd like to hear how every day people cope with their MS symptoms. Brain fog, heat intolerance, spasticity, pain control, fatigue, depression and finding doctors that 'get it' as well as still having family and friends not understanding MS are things I'd like to learn more about- or maybe just have a place to vent.I'm trying to decide if it's worth the effort to change neurologist.I'm willing to discuss mediactions with anyone wondering about whatever different treatment the doctor is recommending for them. I think I've been on almost everything--copaxone, rebif and now tysabri as well as dozens of other meds for multiple symptoms.I've pretty much come to terms with not being able to work any more. I've been through the nighmare of getting on disabilty. I'm still learning ways to deal with non-existant finances.Thanks for listening.Bacchi

Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today.

[Guest guest]

Bacchi,

I am also 47 years old. I have 3 sons and

1 daughter. She is 17 and going to be a Senior this year. I live in North Texas—not

quite as humid as Alabama

but still brutally hot. Where in Alabama

do you live? I lived for many years in Pensacola,

Florida and we still vacation in Gulf Shores.

Love the beaches.

I was diagnosed in 2003 and am currently

on Rebif. I tried Avonex first but couldn’t shake the side effects. Rebif

seems to be working for me though I hate having to inject three times a week.

This group is full of good advice and a

great place to vent. So glad you joined us,

Connie B

From: MSersLife

[mailto:MSersLife ] On Behalf

Of msbacchi

Sent: Friday, July 18, 2008 9:56

AM

To: MSersLife

Subject: Glad I found you

Hi everyone.

Thanks for welcoming me into your group.

I'm 47, divorced mom of 3 daughters. My youngest will be moving away

to college soon. I'm also mom to 2 pugs. I live in south Alabama--

the land of unbearable heat and 100% humidity. I was diagnosed in

2004--not really sure how long I've really had MS, probably since the

mid 80's.

I've read all the " official " MS info pages but I'd like to hear how

every day people cope with their MS symptoms. Brain fog, heat

intolerance, spasticity, pain control, fatigue, depression and

finding doctors that 'get it' as well as still having family and

friends not understanding MS are things I'd like to learn more about-

or maybe just have a place to vent.

I'm trying to decide if it's worth the effort to change neurologist.

I'm willing to discuss mediactions with anyone wondering about

whatever different treatment the doctor is recommending for them. I

think I've been on almost everything--copaxone, rebif and now tysabri

as well as dozens of other meds for multiple symptoms.

I've pretty much come to terms with not being able to work any more.

I've been through the nighmare of getting on disabilty. I'm still

learning ways to deal with non-existant finances.

Thanks for listening.

Bacchi

[Guest guest]

Dear Bacchi, We are glad you found us as well! I am on Tysabri as well. I am at the precipice of beginning the disability application process; this from your perspective, as well as many others' doesn't sound like much fun! lol! I'm a bit apprehensive to say the least! I found out I have sleep apnea, so some of my fog has been lifted with the use of a CPAP. I'll be going back on Provigil to help with fatigue. I am certain summer is difficult for us all, and my walking is definitely compromised when I go out lately in 80-90 degree heat with 96 or so % humidity! My balance is off, and my left leg needs to get dragged a bit. There seems to be nothing to do, except cooling vests and/or staying in the AC as much as possible. I find this hard to do with kids aged: 8,11,14,16. (My 20 yr old is out and working). Neurontin, topomax and lamictal help with my trigeminal neuralgia. The latter helps too with depression, along with abilify and effexor. I am on an alphabet soup of meds! I'm not too crazy about this, but it is what helps me get through each day.Sorry, this has turned into a longer post than I had intended. blessings to you, Kate in NY Glad I found youTo: MSersLife > Hi everyone.> > Thanks for welcoming me into your group.> > I'm 47, divorced mom of 3 daughters. My youngest will be moving > away > to college soon. I'm also mom to 2 pugs. I live in south > Alabama--> the land of unbearable heat and 100% humidity. I was diagnosed > in > 2004--not really sure how long I've really had MS, probably > since the > mid 80's.> > I've read all the "official" MS info pages but I'd like to hear > how > every day people cope with their MS symptoms. Brain fog, heat > intolerance, spasticity, pain control, fatigue, depression and > finding doctors that 'get it' as well as still having family and > friends not understanding MS are things I'd like to learn more > about- > or maybe just have a place to vent.> > I'm trying to decide if it's worth the effort to change neurologist.> > I'm willing to discuss mediactions with anyone wondering about > whatever different treatment the doctor is recommending for > them. I > think I've been on almost everything--copaxone, rebif and now > tysabri > as well as dozens of other meds for multiple symptoms.> > I've pretty much come to terms with not being able to work any > more. > I've been through the nighmare of getting on disabilty. I'm > still > learning ways to deal with non-existant finances.> > Thanks for listening.> > Bacchi > > > > > > > > > > Please visit: http://www.bicycleman.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

Attachment: vcard [not shown]

[Guest guest]

Hi Challis

Thanks for the welcome.

I wish you well with your search for a dx. I don't wish MS on anyone

but when I finally got diagnosed I was actually relieved to have a

name for all the odd things that had been happening to me.

Finding a doctor that will listen and order the correct test is so

frustrating. I have not read all of your posts but I'm sure your mom

has made sure you've had all the correct tests.

If you ever want to vent or compare notes about uninformed or

misinformed docs I've been through some doozies. Ever have anyone

tell you that since you could walk you couldn't possibly have MS?

Hope you get the news you need soon.

Glad you are getting to know some pugs. I think my dogs are the

perfect MS mascots-- very low energy and heat intolerant just like

their mom One of them even drags the same leg I do-- but it's

only when he thinks the puppy is getting too much attention and he

wants extra hugs. ( Spent a fortune making sure there really was

nothing wrong with his leg--be my luck to have my poor old doggie

mis-diagnosed too).

Take care

B

>

> Hi Bacchi,

> Welcome aboard!  )

> I'm Challis and I don't have a dx yet.  My Mom does have dx'd MS

(she's Sharon... our list's leader).  I've had symptoms for about 12

years now and began looking for answers almost 4 years ago.

> My husband, , and I love in Arizona and have four children. 

is 21, will be 18 next month, Jenna is 8 and Maya will be

5 next months. 

> I'm a sister-in-law to two pugs (LOL 's parents have two) and

my girls really wish we had a couple pugs living with us.  LOL

> Challis

>

>

>

> Glad I found you

>

>

> Hi everyone.

>

> Thanks for welcoming me into your group.

>

> I'm 47, divorced mom of 3 daughters. My youngest will be moving

away

> to college soon. I'm also mom to 2 pugs. I live in south Alabama--

> the land of unbearable heat and 100% humidity. I was diagnosed in

> 2004--not really sure how long I've really had MS, probably since

the

> mid 80's.

>

> I've read all the " official " MS info pages but I'd like to hear how

> every day people cope with their MS symptoms. Brain fog, heat

> intolerance, spasticity, pain control, fatigue, depression and

> finding doctors that 'get it' as well as still having family and

> friends not understanding MS are things I'd like to learn more

about-

> or maybe just have a place to vent.

>

> I'm trying to decide if it's worth the effort to change neurologist.

>

> I'm willing to discuss mediactions with anyone wondering about

> whatever different treatment the doctor is recommending for them. I

> think I've been on almost everything-- copaxone, rebif and now

tysabri

> as well as dozens of other meds for multiple symptoms.

>

> I've pretty much come to terms with not being able to work any

more.

> I've been through the nighmare of getting on disabilty. I'm still

> learning ways to deal with non-existant finances.

>

> Thanks for listening.

>

> Bacchi

>

[Guest guest]

Bacchi,

Mobile is a great city. I saw my first concert there back in the late

70s. Pensacola

wasn’t big enough for an arena back then. It has definitely grown a lot

since then.

My sons are 22, 25, and 25. I have a set

of identical twin boys--- men, I guess. One is getting married in October and

the other is graduating college next week. The three of them have been an

adventure to raise. My daughter has been a piece of cake so far but I know

Senior year is never easy. Lots of testing of boundaries….

I am hoping to have a MRI after my next

neuro appointment. I would like to take a break from the Rebif for 6 months but

my neuro wants me to stay on. She says I am doing really well so why rock the

boat. Just tired of being on medication. I have been on either Avonex or Rebif

for the past 4 years. I am starting a new teaching job in August —5th

and 6th grade special ed so I know she will try to convince me to

stay on medication. I will have to think about it.

Have a good night,

Connie B

From: MSersLife

[mailto:MSersLife ] On Behalf

Of msbacchi

Sent: Saturday, July 19, 2008 1:40

PM

To: MSersLife

Subject: Re: Glad I found

you

Connie

Thanks for the welcome. I'm in Mobile--midtown.

I've got cousins in

P'cola--beautiful over there. I too love the beaches but have to wait

for cooler weather before I venture out again.

Hope your daughter enjoys her senior year--always seemed to be an

extra interesting time for my girls. How old are your sons ?

I know what you mean about the injections. I started out on rebif but

had an awful time with the side effects. Switched to copaxone with

daily injections--did not work at all for me--lots of new lesions on

my MRIs. I'm learning no two people have the same exact MS and what

works for one won't always work for someone else. Glad I found

tysabri.

Take care

B

>

> Bacchi,

>

>

>

> I am also 47 years old. I have 3 sons and 1 daughter. She is 17 and

going to

> be a Senior this year. I live in North Texas-not quite as humid as

Alabama

> but still brutally hot. Where in Alabama

do you live? I lived for

many years

> in Pensacola, Florida

and we still vacation in Gulf

Shores. Love the

> beaches.

>

>

>

> I was diagnosed in 2003 and am currently on Rebif. I tried Avonex

first but

> couldn't shake the side effects. Rebif seems to be working for me

though I

> hate having to inject three times a week.

>

> This group is full of good advice and a great place to vent. So

glad you

> joined us,

>

> Connie B

>

>

>

> _____

>

> From: MSersLife

[mailto:MSersLife ]

On Behalf

> Of msbacchi

> Sent: Friday, July 18, 2008 9:56 AM

> To: MSersLife

> Subject: Glad I found you

>

>

>

> Hi everyone.

>

> Thanks for welcoming me into your group.

>

> I'm 47, divorced mom of 3 daughters. My youngest will be moving

away

> to college soon. I'm also mom to 2 pugs. I live in south Alabama--

> the land of unbearable heat and 100% humidity. I was diagnosed in

> 2004--not really sure how long I've really had MS, probably since

the

> mid 80's.

>

> I've read all the " official " MS info pages but I'd like to hear

how

> every day people cope with their MS symptoms. Brain fog, heat

> intolerance, spasticity, pain control, fatigue, depression and

> finding doctors that 'get it' as well as still having family and

> friends not understanding MS are things I'd like to learn more

about-

> or maybe just have a place to vent.

>

> I'm trying to decide if it's worth the effort to change neurologist.

>

> I'm willing to discuss mediactions with anyone wondering about

> whatever different treatment the doctor is recommending for them. I

> think I've been on almost everything--copaxone, rebif and now

tysabri

> as well as dozens of other meds for multiple symptoms.

>

> I've pretty much come to terms with not being able to work any

more.

> I've been through the nighmare of getting on disabilty. I'm still

> learning ways to deal with non-existant finances.

>

> Thanks for listening.

>

> Bacchi

>

[Guest guest]

I never heard of adderall; can you tell me a bit about it? Is it helping your fatigue? Is it in dosages that are easy to taper up or down if you do get wired as you seem to be? Sorry for all the questions. blessings, Kate > Glad I > found youTo: MSersLife > Hi everyone.> > Thanks > for > welcoming me into your group.> > I'm 47, divorced mom of 3 > daughters. > My youngest will be moving > away > to college soon. I'm also > mom to > 2 pugs. I live in south > Alabama--> the land of unbearable > heat and > 100% humidity. I was diagnosed > in > 2004--not really sure how > long > I've really had MS, probably > since the > mid 80's.> > I've > read all > the "official" MS info pages but I'd like to hear > how > every > day > people cope with their MS symptoms. Brain fog, heat > > intolerance, > spasticity, pain control, fatigue, depression and > finding > doctors > that 'get it' as well as still having family and > friends not > understanding MS are things I'd like to learn more > about- > or > maybe just have a place to vent.> > I'm trying to decide if it's > worth the effort to change neurologist.> > I'm willing to > discuss > mediactions with anyone wondering about > whatever different > treatment the doctor is recommending for > them. I > think I've > been > on almost everything--copaxone, rebif and now > tysabri > as > well as > dozens of other meds for multiple symptoms.> > I've pretty much > come > to terms with not being able to work any > more. > I've been > through > the nighmare of getting on disabilty. I'm > still > learning > ways to > deal with non-existant finances.> > Thanks for listening.> > > Bacchi > > > > > > > > > > > Please visit: > http://www.bicycleman.comawesome > guy, fantastic site. All types of bicyles, many recumbents; > perfect > for an MS Bike Tour!> >> > > Please visit: http://www.bicycleman.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

Attachment: vcard [not shown]

[Guest guest]



I think Mobile is where ARC has a great caseworker - we got our job done - but we always laughed a lot - I don't know how many times I had to say ssshhhh the boss thinks we are having too much fun - someplace down there - sorry mind spasms

Glad I found you> > > > Hi everyone.> > Thanks for welcoming me into your group.> > I'm 47, divorced mom of 3 daughters. My youngest will be moving away > to college soon. I'm also mom to 2 pugs. I live in south Alabama--> the land of unbearable heat and 100% humidity. I was diagnosed in > 2004--not really sure how long I've really had MS, probably since the > mid 80's.> > I've read all the "official" MS info pages but I'd like to hear how > every day people cope with their MS symptoms. Brain fog, heat > intolerance, spasticity, pain control, fatigue, depression and > finding doctors that 'get it' as well as still having family and > friends not understanding MS are things I'd like to learn more about- > or maybe just have a place to vent.> > I'm trying to decide if it's worth the effort to change neurologist.> > I'm willing to discuss mediactions with anyone wondering about > whatever different treatment the doctor is recommending for them. I > think I've been on almost everything--copaxone, rebif and now tysabri > as well as dozens of other meds for multiple symptoms.> > I've pretty much come to terms with not being able to work any more. > I've been through the nighmare of getting on disabilty. I'm still > learning ways to deal with non-existant finances.> > Thanks for listening.> > Bacchi>

[Guest guest]

Kate,

Adderall is drug used for ADD. It is like

Ritalin and I assume if was prescribed for fatigue. My son was on it for a

while in high school. He didn’t like Ritalin because it made him jumpy

while the Adderall didn’t. I take extended release Ritalin for my fatigue

and it doesn’t make me jumpy at all.

Connie B

From:

MSersLife [mailto:MSersLife ] On Behalf Of katelloydkidz@...

Sent: Sunday, July 20, 2008 4:10

AM

To: MSersLife

Subject: Re: Glad I found

you

I never heard of adderall; can you tell me a bit about

it? Is it helping your fatigue? Is it in dosages that are easy to taper up or

down if you do get wired as you seem to be? Sorry for all the questions.

blessings, Kate

> Glad I

> found youTo: MSersLife > Hi everyone.> >

Thanks

> for

> welcoming me into your group.> > I'm 47, divorced mom of 3

> daughters.

> My youngest will be moving > away > to college soon. I'm also

> mom to

> 2 pugs. I live in south > Alabama-->

the land of unbearable

> heat and

> 100% humidity. I was diagnosed > in > 2004--not really sure how

> long

> I've really had MS, probably > since the > mid 80's.> > I've

> read all

> the " official " MS info pages but I'd like to hear > how >

every

> day

> people cope with their MS symptoms. Brain fog, heat >

> intolerance,

> spasticity, pain control, fatigue, depression and > finding

> doctors

> that 'get it' as well as still having family and > friends not

> understanding MS are things I'd like to learn more > about- > or

> maybe just have a place to vent.> > I'm trying to decide if it's

> worth the effort to change neurologist.> > I'm willing to

> discuss

> mediactions with anyone wondering about > whatever different

> treatment the doctor is recommending for > them. I > think I've

> been

> on almost everything--copaxone, rebif and now > tysabri > as

> well as

> dozens of other meds for multiple symptoms.> > I've pretty much

> come

> to terms with not being able to work any > more. > I've been

> through

> the nighmare of getting on disabilty. I'm > still > learning

> ways to

> deal with non-existant finances.> > Thanks for listening.> >

> Bacchi >

> > > > > > > > > > Please visit:

> http://www.bicycleman.comawesome

> guy, fantastic site. All types of bicyles, many recumbents;

> perfect

> for an MS Bike Tour!

> >

>

>

>

Please visit: http://www.bicycleman.com

awesome guy, fantastic site. All types of bicyles, many recumbents; perfect for

an MS Bike Tour!

[Guest guest]

Hi Bacchi,

Answers would be nice. )

In addition to the lab work and Neuro eval, I've only had two MRI's of my brain and brain stem. Last year I was going to have a Spinal Tap, but something went wonky in scheduling. I called several times, but nothing came of it. I learned there had been several changes with the Neuro's Nurse, so I chalked it up to that. I let it go. I see him on Friday, so we'll see what happens from there. I'm not in a flare of any sort, so I'm not so sure about doing a Spinal Tap. That's why I let it go last time. LOL

This Neuro believes in Spinal Tap over MRI. The first Neuro only mentioned it to try to scare me. lol Ha! He didn't know I knew what I knew! LOL

LOL I've heard of others being told that if they can walk they don't have MS. There are a lot of weenie Docs out there. I've only seen two Neuros myself. The first was a weenie. I was still breastfeeding my youngest when I saw him and had my first MRI. That didn't dawn on him until my follow-up with him. Then he tried to fault my breastfeeding for my symptoms. LOL My husband was with me and later said it was at that point he feared for the Doc's life. ROFL

Your pugs sound adorable! I love the story of your leg dragger! LOL

Hugs,

Challis

Glad I found you> > > Hi everyone.> > Thanks for welcoming me into your group.> > I'm 47, divorced mom of 3 daughters. My youngest will be moving away > to college soon. I'm also mom to 2 pugs. I live in south Alabama--> the land of unbearable heat and 100% humidity. I was diagnosed in > 2004--not really sure how long I've really had MS, probably since the > mid 80's.> > I've read all the "official" MS info pages but I'd like to hear how

> every day people cope with their MS symptoms. Brain fog, heat > intolerance, spasticity, pain control, fatigue, depression and > finding doctors that 'get it' as well as still having family and > friends not understanding MS are things I'd like to learn more about- > or maybe just have a place to vent.> > I'm trying to decide if it's worth the effort to change neurologist.> > I'm willing to discuss mediactions with anyone wondering about > whatever different treatment the doctor is recommending for them. I > think I've been on almost everything-- copaxone, rebif and now tysabri > as well as dozens of other meds for multiple symptoms.> > I've pretty much come to terms with not being able to work any more. > I've been through the nighmare of getting on disabilty. I'm still > learning ways to deal with non-existant finances.>

> Thanks for listening.> > Bacchi>