Re: You are an upbeat group!

[Guest guest]

We have many in our group who are very far

along Road MS--very--not everyone is posting

on a Sunday, but you will see their posts and

learn more of what meds they have been pres

cribed. No Way is this a group for people with

a diagnosis and no suffering. You will see if

you stick with us, and you will learn what has

worked for some, not for others, and about

many options. Also, I would recommend just

going to Yahoo Groups via your search bar

and clicking on MSerslife, so that you can re

view past posts. This is no casual "walk in the

park" here in our group.

Love to you,

Connie--sorry about getting your name wrong

when only the e-mail address had been posted

to us--

Love,

n

To: MSersLife Sent: Friday, January 9, 2009 2:10:32 PMSubject: You are an upbeat group!

I don't wish to be a downer here in your happy domain, so perhaps one of you could direct me to a site or someone who is further along the road so to speak with this disease. Everything I've read is for folks diagnosed within 3 to 10 years and I'm much further along the road and in need of information regarding the later stages which I can not find. I'm 55 now and have been misdiagnosed for a very long time. Thanks Connie

[Guest guest]

you caught us on good days - hang in there and you will get

more than an earfull

with the temperture fluctuations this last month - windchill

10 degrees or lower to 80 degrees - and all in 24 hours - I

can barely move and my pain meds are not working - I just

grafuated to an arm crutch for good days - the walker is for

not so good days - I fall at least 3 times a week - 5 + if I

am stressed - the EMG just gave me the diagnosis of

bilateral carpal tunnel that I have had for more than 18

years - if I sit for more that 5 minutes I get dizzy and

pass out - I was a counselor and social worker - I am brain

dead - I have ADD - I have aphasis - I get lost out of the

subdivision - I have two typing sheets of names and

addresses and phone numbers to call when I get lost - and

that is here in town - my 3 sisters here in town are used to

me calling -cussing - fuming and wanting to know where in

blazes I am - I get one thing done and I am flat on my back

with at least 2 pass out naps a day - I have sleep apnea and

narcolepsy - even with a CPAP I am not sleeping more than 2

hours at a time - if I get a total of 4 hours sleep I am

lucky - add GERD - Acid Reflux - my asthma kicked in last

April and all of my allergies - so bad I am on two inhalers

- every two hours for one and 4 times a day for the other -

I take singulair - sometimes twice a day and 2 OTC allergy

pills - not counting honey in my tea three times a day =

should I go one - we all live with it - others are worse off

than I am

you sure you want to leave

we go in and our of hospital - we share what works and

doesn't works - check the files - some of us like me can not

take much of the prescribed medications - I see a herbalist

and a nutritionist - my neurologist accepts it and supports

it - I have not been on MS meds for 4 1/2 years - at some

point I may have to - for now ..

this is a group that laughs with you - cries with you and

yes we do everything we can to suppoet you

we love you - we walk in your shoes - we have been there

You are an upbeat group!

Date: Fri, 09 Jan 2009 22:10:32 -0000

>I don't wish to be a downer here in your happy domain, so

>perhaps one of you could direct me to a site or someone

>who is further along the road so to speak with this

>disease. Everything I've read is for folks diagnosed

>within 3 to 10 years and I'm much further along the road

>and in need of information regarding the later stages

>which I can not find. I'm 55 now and have been

>misdiagnosed for a very long time. Thanks Connie

>

>

[Guest guest]

n was diagnosed at 19 and is now fairly far into senior-citizen-land, I was diagnosed in 2004, yes (on April Fool's Day, no less) but have had it for many years (and I am 54)...and that is only 2 of the many we have here. See, the difference is this is MS-ers LIFE not MS'ers falling slowly into the mire. Stay with the group and you, too, will learn to LIVE with it, as we say, "I have MS, MS doesn't have ME"

(I don't mean to sound harsh, I really don't...but it seems your attitude seems SO self-defeating, and it does Not have to be..)

Hugs

Akiba

You are an upbeat group!

I don't wish to be a downer here in your happy domain, so perhaps one

of you could direct me to a site or someone who is further along the

road so to speak with this disease. Everything I've read is for folks

diagnosed within 3 to 10 years and I'm much further along the road and

in need of information regarding the later stages which I can not find.

I'm 55 now and have been misdiagnosed for a very long time. Thanks

Connie

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[Guest guest]

One of our own giving us the good old " but you don't look sick " crap.

We have all paid our " dues " here no matter how long we have been DXed

or to the undiagnosed that suffer. Please don't tell me I'm not

" sick " enough to compare to your situation. With all due respect you

don't know what WE have been through.

Jolie