new member

[Guest guest]

Hi There. Was just in Muskogee several weeks ago, have a daughter who

has worked for OG & E for 20 years. I have been dx with PLS after YEARS

looking, still not sure isn't HSP========oh well. You have certainly

found a GREAT group,ask ANYTHING,some one will answer you, nothing is

undisscused. Betty M. Ayers

[Guest guest]

Thanks for your support. I am working. I work for a pool supply co. wholesale. I

have some trouble getting around at times but I make it. My boss and my

co-workers support me . And with my faith in God and Jesus Christ I will win

this battle

Rich

[Guest guest]

Rich,

That is awesome that your work place is working with you and not against you

like so many places do.

God is good isnt he, I dont know how some go with out him.

Take care, Sandy

Re: Re: New Member

Thanks for your support. I am working. I work for a pool supply co. wholesale.

I have some trouble getting around at times but I make it. My boss and my

co-workers support me . And with my faith in God and Jesus Christ I will win

this battle

Rich

[Guest guest]

Welcome to a site for people with PLS! Participants on the site continue to

baffle me with all the knowledge of PLS that even my own doctor doesn't have or

communicate.

I'm sorry you have PLS, but those on the site will share your dilemnas and

sickness.

Thanks

Rick

dianamontaguejackson wrote:

Hi everyone. my name is Di and Flora...bless her...gave me this site

to join.

I have PLS. I apparently have had it for 6-10 years but this last

year or so it has turned really nasty. Painful spasms and terrible

stiffnes in my legs, thighs, hips, left arm etc. I slur my words and

can't form certain words now and I have to use a power wheelchair to

get around. This last few months it has really deterorated!

I have a great neurologist at Foothills Neurosciences in Calgary

Alberta...he has dealt with a number of PLS cases.

I am feeling a bit down this last week because of having to re-

adjust...again.....to this new level of disability....but i never

give up!!

I am 47 years ols, divorced with 2 teenage daughters who are very

supportive. I was a crisis counselor for many years, but now I am on

permenant disability.....starvation income! lol.

Would love to hear from any of you.

Thank you Flora, melinda and loretta...who contacted me recently

with support and info!

Di M-J

[Guest guest]

Welcome Di,

You have joined the best group on the internet.Ive only been here for about 6

months and have already learned more than any book or Dr. could tell me and

learn more everyday.Im sorry you have PLS but glad you found our happy family.

Im 40 and live in , Ga.I have a very supportive wife and 1 teenage

daughter and a 10 year old daughter.Hope to here more from you.

Your Friend, Eller

dianamontaguejackson wrote:

Hi everyone. my name is Di and Flora...bless her...gave me this site

to join.

I have PLS. I apparently have had it for 6-10 years but this last

year or so it has turned really nasty. Painful spasms and terrible

stiffnes in my legs, thighs, hips, left arm etc. I slur my words and

can't form certain words now and I have to use a power wheelchair to

get around. This last few months it has really deterorated!

I have a great neurologist at Foothills Neurosciences in Calgary

Alberta...he has dealt with a number of PLS cases.

I am feeling a bit down this last week because of having to re-

adjust...again.....to this new level of disability....but i never

give up!!

I am 47 years ols, divorced with 2 teenage daughters who are very

supportive. I was a crisis counselor for many years, but now I am on

permenant disability.....starvation income! lol.

Would love to hear from any of you.

Thank you Flora, melinda and loretta...who contacted me recently

with support and info!

Di M-J

---------------------------------

[Guest guest]

Hi there Di,

Welcome to our family of friends. You will find many ansewers to questions and

have the worlds best support.

Again welcome, Sandy

New member

Hi everyone. my name is Di and Flora...bless her...gave me this site

to join.

I have PLS. I apparently have had it for 6-10 years but this last

year or so it has turned really nasty. Painful spasms and terrible

stiffnes in my legs, thighs, hips, left arm etc. I slur my words and

can't form certain words now and I have to use a power wheelchair to

get around. This last few months it has really deterorated!

I have a great neurologist at Foothills Neurosciences in Calgary

Alberta...he has dealt with a number of PLS cases.

I am feeling a bit down this last week because of having to re-

adjust...again.....to this new level of disability....but i never

give up!!

I am 47 years ols, divorced with 2 teenage daughters who are very

supportive. I was a crisis counselor for many years, but now I am on

permenant disability.....starvation income! lol.

Would love to hear from any of you.

Thank you Flora, melinda and loretta...who contacted me recently

with support and info!

Di M-J

------------------------------------------------------------------------------

[Guest guest]

You are right about that... the illness is more than enough to deal with, really

you would think medical coverage would be a given. But the health industry

becomes more of a money making machine daily. I have been doing a lot of

research trying to find out what Florida has to offer and beside Medicare to

cover 80% of medical.. there isn't much... We really do not have any programs

that cover medication... well none that I have found yet... but I'll keep

looking...

Thanks a bunch

Angel

phil_m_palmer wrote:

I know this is not much of a solution. But aid varies by state. In PA

they offer a great drug program for PD paitients. In land, the

drug program is pretty good but not as good as PA.

Seems to me that worrying about medical expenses is the last thing a

dialysis paitent needs to worry about.

>

>

>

> Hello, I am a new member and have not really spoken with anyone

about dealing with IgA. I was diagnosised a little over 4 years ago

when I was 28. For the first 3 years or so my kidney function remained

stable at about 25%, then all of a sudden in December of 2003 it took

a nose dive... I was on peritoneal diaylisis by April and it was a

very difficult transisition as you all may know. Now the company I

have been working for over the past 9 years has lost our group

coverage for health insurance. This of course leaves me with Medicare

coverage only. What do you do about prescriptions? And that 20% co pay

can really add up. I have spoken to both my social worker at the

diaylsis center and translife at the hospital and basically I am being

told there aren't any real solutions. I can not imagine that with as

many people that are suffering through Kidney failure, that it is

possible to be in a situation where there is no possibility of

additional or supplemental insurance to Medicare,

> atleast not being offered in the state of Florida.

>

> I am a single mother and I work very hard to make sure that I

maintain as much of a normal life as possible for both me and my

daughter... but what is one to do when everyone closes the door and

will not help accomodate the need for medications and medical needs

that are required to sustain your life? The stress of dealing with the

diaylisis treatment every day, all the meds, the pain in my joints,

the excessive tiredness..and the overall awareness of the illness..is

more than enough but when you add to that the possibility of not

being able to afford medical treatment and medications... I don't know

that it is tolerable... In over 4 years of dealing with my illness...

2 weeks ago was my first nervous breakdown... I was entertaining the

idea of discontinuing my diaylisis treatments and just letting go...

it can be so hard dealing with this day in and day out... and maybe I

make it harder on myself by never really talking about it or

expressing my fears or concerns...

>

> I have read some of your experiences and my heart goes out to all of

you...Any information or experience that you can share with me will be

enlightening.

>

> Thanks a lot

>

> Angel

>

>

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

> Do you Yahoo!?

> The all-new My Yahoo! – Get yours free!

>

>

[Guest guest]

Yeah, Universal Health care.. that is what I was told. I think that is great!

The medication part of it could become an issue but it seems like you have it

under control. I won't know the true impact of my medications cost until the end

of this month... but with out any insurance coverage.. it looks like it will run

close to $1200 per month.. the Epo is the only one now covered by my Medicare...

all others have no coverage at all. That and the co pay for my diaylsis is the

biggest concern I have right now.. but as someone mentioned... I guess you have

to somehow put it out of your mind... not really worry to much about the dollars

and cents... and focus on bettering my health and life the best way I can. I

wonder alot about what happens to those who I cross paths with and then do not

see again. With our health insurance loss at our company.. that stems from two

major illnesses within our company that led to the loss of two of our

employees.. One from fatty liver disease of

pregnancy, she delieverd two twins and after ungoing 15 surgeries and spending

6 weeks in ICU, she passed away, the other spend a year doing Chemo and the last

2 and a half months in ICU before passing. The expenses were so high that our

premiums as a company increased by 73% and no other company would even quote us.

Life is so fragile and when I think about living with IgAN, I know that it could

be worse, but it is sometimes quite scary... there have even been times.. when

my kidney function was right at like 2%, right before I was able to start my

diaylisis, that in my sleep I would think I had passed away in my sleep. I

thought that because my function was so low that I would not wake up in the

morning and when I did wake up .. I couldn't tell if I really woke up or if it

was my spirit... I would have to pinch myself to see if I was real... I know

that sounds crazy... but in a since the diaylsis is a life support system. With

out it... we can not survive... I think that thought

sometimes saddens me. But on the bright side, at least medical technology has

advanced enough to have this type of treatment available.

Pierre Lachaine wrote:Angel,

I will talk to you more about dialysis and my choice of method tomorrow. I'm

on dialysis from about 6 PM today and I don't get home until about 10,

assuming I don't have to wait to get on.

In Canada, we have universal health care, so, everyone gets totally free

medical care. There is zero cost for dialysis or for a transplant. However,

that does not include prescriptions. For drugs that are administered in

hospital or in my case, at the dialysis centre, these are provided free. But

regular prescriptions I take at home are not (including the rather expensive

prescriptions once I get a kidney transplant). At the moment, I average

about $2000 worth (Cdn $) yearly for prescriptions, but I only pay $2 for

each one . If I was on PD rather than hemodialysis, my epo would be my

responsibilty, for example, but because I have in-centre hemodialysis, the

hospital pays for it. For people with low incomes like me, there are a

couple of different prescription drug programs in my province of Ontario

(each province, like each state in the US, has its own set of programs, as

it is not a federal responsibility). One has a quarterly deductible, and the

other charges only a $2 admin fee per prescription. I just barely qualify

for this second one, even though my total family income is only about $1800

per month. This is my " social security " disability pension plus my wife's

income. Every year, I have to put together all the paperwork they require to

review my eligibility for this lower low income drug program. This is in

addition to every single month when I have to send an income report, even

though my income is fixed and it never changes. There's always something.

Sometimes they just decide to review it for no apparent logical reason.

Overall, despite the administrative headaches that happen every once in a

while, it seems relatively straigthforward and easy compared to the system

in the U.S., so, I'm not complaining.

My first year on dialysis, there was actually an American sitting in the

same bay across from me. I only ever got to talk to him in the waiting room

though. I don't know what happened to him. At hemodialysis, often you

realize it's been a while since you last saw someone, and then you start

wondering what happened. Sometimes they move, sometimes they simply change

to a different shift, but sometimes, when nobody tells you anything, you can

guess what happened.

Pierre

New Member

>

> Hello, I am a new member and have not really spoken with anyone about

> dealing with IgA. I was diagnosised a little over 4 years ago when I was

28.

> For the first 3 years or so my kidney function remained stable at about

25%,

> then all of a sudden in December of 2003 it took a nose dive... I was on

> peritoneal diaylisis by April and it was a very difficult transisition as

> you all may know. Now the company I have been working for over the past 9

> years has lost our group coverage for health insurance. This of course

> leaves me with Medicare coverage only. What do you do about prescriptions?

> And that 20% co pay can really add up. I have spoken to both my social

> worker at the diaylsis center and translife at the hospital and basically

I

> am being told there aren't any real solutions. I can not imagine that with

> as many people that are suffering through Kidney failure, that it is

> possible to be in a situation where there is no possibility of additional

or

> supplemental insurance to Medicare,

> atleast not being offered in the state of Florida.

>

> I am a single mother and I work very hard to make sure that I maintain as

> much of a normal life as possible for both me and my daughter... but what

is

> one to do when everyone closes the door and will not help accomodate the

> need for medications and medical needs that are required to sustain your

> life? The stress of dealing with the diaylisis treatment every day, all

the

> meds, the pain in my joints, the excessive tiredness..and the overall

> awareness of the illness..is more than enough but when you add to that

the

> possibility of not being able to afford medical treatment and

medications...

> I don't know that it is tolerable... In over 4 years of dealing with my

> illness... 2 weeks ago was my first nervous breakdown... I was

entertaining

> the idea of discontinuing my diaylisis treatments and just letting go...

it

> can be so hard dealing with this day in and day out... and maybe I make it

> harder on myself by never really talking about it or expressing my fears

or

> concerns...

>

> I have read some of your experiences and my heart goes out to all of

> you...Any information or experience that you can share with me will be

> enlightening.

>

> Thanks a lot

>

> Angel

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

[Guest guest]

Sometimes I see myself as one of the walking corpses in the movie " Night of

the Living Dead " :-)

Seriously though, I know what you mean. We are being kept alive by

technology. But then, no matter what religion or philosophy one uses to make

sense of things, the technology is there. If we applied the same analogy to

other diseases, there are a lot of people alive today who would have been

dead a long time ago without some kind of medical technology: diabetics,

people who didn't get serious childhood diseases because there were

vaccines, people who were resuscitated by a defibrillator, asthmatics... the

list is endless, really.

I'm just glad I didn't get kidney failure as a teenager, because at that

time, dialysis was not widely available yet - keeping in mind that my

initial kidney disease symptoms were found only about a decade after that

time. That's shaving it pretty close, in retrospect.

Pierre

New Member

> >

> > Hello, I am a new member and have not really spoken with anyone about

> > dealing with IgA. I was diagnosised a little over 4 years ago when I was

> 28.

> > For the first 3 years or so my kidney function remained stable at about

> 25%,

> > then all of a sudden in December of 2003 it took a nose dive... I was on

> > peritoneal diaylisis by April and it was a very difficult transisition

as

> > you all may know. Now the company I have been working for over the past

9

> > years has lost our group coverage for health insurance. This of course

> > leaves me with Medicare coverage only. What do you do about

prescriptions?

> > And that 20% co pay can really add up. I have spoken to both my social

> > worker at the diaylsis center and translife at the hospital and

basically

> I

> > am being told there aren't any real solutions. I can not imagine that

with

> > as many people that are suffering through Kidney failure, that it is

> > possible to be in a situation where there is no possibility of

additional

> or

> > supplemental insurance to Medicare,

> > atleast not being offered in the state of Florida.

> >

> > I am a single mother and I work very hard to make sure that I maintain

as

> > much of a normal life as possible for both me and my daughter... but

what

> is

> > one to do when everyone closes the door and will not help accomodate the

> > need for medications and medical needs that are required to sustain your

> > life? The stress of dealing with the diaylisis treatment every day, all

> the

> > meds, the pain in my joints, the excessive tiredness..and the overall

> > awareness of the illness..is more than enough but when you add to that

> the

> > possibility of not being able to afford medical treatment and

> medications...

> > I don't know that it is tolerable... In over 4 years of dealing with my

> > illness... 2 weeks ago was my first nervous breakdown... I was

> entertaining

> > the idea of discontinuing my diaylisis treatments and just letting go...

> it

> > can be so hard dealing with this day in and day out... and maybe I make

it

> > harder on myself by never really talking about it or expressing my fears

> or

> > concerns...

> >

> > I have read some of your experiences and my heart goes out to all of

> > you...Any information or experience that you can share with me will be

> > enlightening.

> >

> > Thanks a lot

> >

> > Angel

> >

> >

> >

> >

> >

> >

> > To edit your settings for the group, go to our Yahoo Group

> > home page:

> > http://groups.yahoo.com/group/iga-nephropathy/

> >

> > To unsubcribe via email,

> > iga-nephropathy-unsubscribe

> > Visit our companion website at www.igan.ca. The site is entirely

supported

> by donations. If you would like to help, go to:

> > http://www.igan.ca/id62.htm

> >

> > Thank you

> >

> >

> >

[Guest guest]

I hope you find something to help you, Angel.

All I can say is I'm glad I never really had that problem, despite a few

bureaucratic hassles. I don't think I would have been able to handle that

plus the kidney failure.

Pierre

Re: Re: New Member

You are right about that... the illness is more than enough to deal with,

really you would think medical coverage would be a given. But the health

industry becomes more of a money making machine daily. I have been doing a

lot of research trying to find out what Florida has to offer and beside

Medicare to cover 80% of medical.. there isn't much... We really do not have

any programs that cover medication... well none that I have found yet... but

I'll keep looking...

Thanks a bunch

Angel

[Guest guest]

Pierre,

People in the USA that I've talked to have been convienced that

Universal Healthcare is pure evil. They think that thier healthcare

will be at the whim of federal beuracrats. They fear waiting for

services, being denied services, or being cared for by low quality

doctors/facilities. These points always make me laugh because with the

current system here in the United States we are waiting for services,

being denied services, and often delagated to physician's aids and

nurses. Many residents of Washington DC do not even have a close

hospital because many went bancrupt in the early 2000's. These sick

people need to travel to the suburbs to get a hospital. Recently I had

to wait a week to get approval from my insurance company for a CT

Scan. My doctor is required by my insurance company to fill out a

justification for my prescription and it's dosage. To see a specialist

my doctor needs to write the order, alert me to whom I will be seeing,

then I need to call his secratary and ASK for a referral to Dr. X. She

then enters the information into my insurance company's web-based

referral system. If I do not follow these procedures I will be

required to pay the doctor in full. Recently I went to my PCP for a

routine checkup. My copay was $20. About a month later I rcvd the

insurance claim in the mail. I paid $20, the insurance paid $0 so the

doctor only rcvd what I paid. Is that fair? Won't this force him to

rush paitiants thru like cattle? To be fair I have seen specialist who

were paid $350 for 1/2 hours worth of work. I am not so sure that is

fair to me or the insurance company.

The real irony is to people with no healthcare. They are billed at the

FULL rate! So the least able to pay are charged the most?!?! Makes

sense to me.

But if I were an illegal alien, I'd have free healthcare in the USA.

Phil

> I hope you find something to help you, Angel.

>

> All I can say is I'm glad I never really had that problem, despite a few

> bureaucratic hassles. I don't think I would have been able to handle

that

> plus the kidney failure.

>

> Pierre

>

> Re: Re: New Member

>

>

>

>

> You are right about that... the illness is more than enough to deal

with,

> really you would think medical coverage would be a given. But the health

> industry becomes more of a money making machine daily. I have been

doing a

> lot of research trying to find out what Florida has to offer and beside

> Medicare to cover 80% of medical.. there isn't much... We really do

not have

> any programs that cover medication... well none that I have found

yet... but

> I'll keep looking...

>

> Thanks a bunch

> Angel

[Guest guest]

I was once a comfortable middle classer. Things can change quickly. People

just don't realize. I don't want to get into politics, but, boy, I'm glad we

have universal medicare in Canada. I can't complain about my care

whatsoever. Modern facilities, great doctors and nurses, great pre-dialysis

renal care system for patients. I don't know how it is in other regions, but

renal care in Ottawa is first class all the way, and it has never cost me a

penny. Were even in the forefront for some things, like home hemodialysis,

for example.

There are some things that people might wait for, but certainly not kidney

care. Our system here actually costs less than health care in the US,

overall, because most of it is non-profit.

Pierre

Re: New Member

>

>

>

> Pierre,

>

> People in the USA that I've talked to have been convienced that

> Universal Healthcare is pure evil. They think that thier healthcare

> will be at the whim of federal beuracrats. They fear waiting for

> services, being denied services, or being cared for by low quality

> doctors/facilities. These points always make me laugh because with the

> current system here in the United States we are waiting for services,

> being denied services, and often delagated to physician's aids and

> nurses. Many residents of Washington DC do not even have a close

> hospital because many went bancrupt in the early 2000's. These sick

> people need to travel to the suburbs to get a hospital. Recently I had

> to wait a week to get approval from my insurance company for a CT

> Scan. My doctor is required by my insurance company to fill out a

> justification for my prescription and it's dosage. To see a specialist

> my doctor needs to write the order, alert me to whom I will be seeing,

> then I need to call his secratary and ASK for a referral to Dr. X. She

> then enters the information into my insurance company's web-based

> referral system. If I do not follow these procedures I will be

> required to pay the doctor in full. Recently I went to my PCP for a

> routine checkup. My copay was $20. About a month later I rcvd the

> insurance claim in the mail. I paid $20, the insurance paid $0 so the

> doctor only rcvd what I paid. Is that fair? Won't this force him to

> rush paitiants thru like cattle? To be fair I have seen specialist who

> were paid $350 for 1/2 hours worth of work. I am not so sure that is

> fair to me or the insurance company.

>

> The real irony is to people with no healthcare. They are billed at the

> FULL rate! So the least able to pay are charged the most?!?! Makes

> sense to me.

>

> But if I were an illegal alien, I'd have free healthcare in the USA.

>

> Phil

>

>

[Guest guest]

Welcome Laurie,

The waiting is the absolute hardest part of all of this. Fear of the unknown

makes our minds roam and think the worst. I will keep you in my prayers. Please

keep us posted.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

New Member

Good Morning;

I was diagnosed with breast cancer on August 8th after having a

mastectomy and lymph node removal. It has been a very frustrating

experience for me. I have been waiting to hear from the cancer center

and discovered that the surgeon failed to send them my information

for a referral. I don't know much about my cancer. I do know that

there were two tumors with one being " the size of an orange " as the

surgeon put it. He stated that the cancer has been there for quite a

long time, that there were 2 types and that I would need aggressive

chemotherapy and radiation. I am finding it rather difficult to have

so little information. I am the type of person who needs to know as

much information as possible and right now feel that I know basically

nothing. I am very happy to have found this group and have gained

valuable information from the postings. I am hoping that today will

be the day that I hear from the cancer center and things will begin

happening.

Laurie

" Shoot for the moon. Even if you miss, you'll land among the stars.

Les Brown

------------------------------------------------------------------------------

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Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.11.5/426 - Release Date: 8/23/2006

[Guest guest]

hello - i am currently being treated for high antibodie levels for my

thyroid. i take 45mg of armour a day - i have also found out that my

cortisol levels are low - my dr suggested taking dhea. i take one

tablet a day - i have a dr's apt 1 week from today - i still feel

sluggish - my antibodies as of last testing (sept) were still high -

i'd love any suggestions that you can give me - i'm going to start

taking my armour by placing it under my tongue - not sure if i should

scatter the dose throughout the day or take all at once - again any

info would be great - i am so greatful that i found this website - my

dr is excellent - she is open to trying anything i suggest - so please

send me info - thanks again - stacy

[Guest guest]

Hi . What labs for cortisol have you had? It would help if you

could post them with the lab ranges so we can better offer advice.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

[Guest guest]

i had a full range of adrenal test due - the cortisol levels were 4. i don't

have the exact type of test - i left my copy at my dr's office. i hope this

helps - thanks again - stacy

Re: new member

Hi . What labs for cortisol have you had? It would help if you

could post them with the lab ranges so we can better offer advice.

--

Artistic Grooming- Hurricane WV

http://www.stopthet hyroidmadness. com/

http://health. groups.yahoo. com/group/ NaturalThyroidHo rmonesADRENALS/

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

[Guest guest]

Sounds liek you had a saliva cortisoll test? It still would help us help

you if you can get a copy and tell us your results as it deoends on HOW

low you are and when as to which med is liely to work best for you.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

[Guest guest]

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/message/3909\

0

I have replied to you and other s as well, you can read the whole thread

by clicking on the above link

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/