new member

Report post · December 21, 2004

HI, Kim,

I hope you've gotten some answers by now. I just wanted to welcome you to

the group!

in Va.

* Hello everyone.

I have just joined this group and have read several back posts from the

board and would like to introduce myself and ask a few questions (though I

know you must feel as though you are repeating yourselves constantly to new

members).

I have a long family history of low thyroid in my family mom, mom's mom,

sister). I am almost certain I have has symptoms on and off of this for

several years....I had a doc take some blood (on a better day) and all I got

back from them was the secretary called and said the tests were in the

normal range....... I am not convinced...esp after reading some posts on

this and another loop......The thread on unexplained pain just clinched it

for me......oh, I am not crazy...or just lazy!

I just recently had a rough miscarriage and I will wager that it had a lot

to do with dipping thyroid levels....bouts with very cold spells, etc.(which

I was having at the onset of miscarriage).

Anyway, I really, really want to do what I can naturally for this...however

I may be stuck with meds no matter what I do and I would like to know how I

can find a doctor that knows something about this condition (in the way you

are all educated).....

I simply can not go on like this as I know you all feel the same....I have 6

children which I homeschool and there is little room for mommy is too tired,

etc. and we are always getting behind on everything as I wake up tired....go

to bed tired, have achy flu like symptoms....etc.etc......all known to you

all....

If anyone would be willing to do an overview of how you treat this problem

naturally, I would be surely thankful for your time and efforts!

Thank you so kindly,

Kim in Tn

..

Report post · February 22, 2005

Welcome to the group. I am n\fairly new myself and can say that you have

found the best group of support partners. I lHope you start feeling better. This

stuff is all new to me as well. i am in the process of finding a doctor and

getting a diagnosis as well. They are 99% sure that I have IGAN too. Have an

apointment on the 10th.

Hope to get to talk to you some more. Joleen

Report post · February 23, 2005

Hi Ajjbehm,

A very warm welcome to you. I am sorry you have IgAN and need to go through

the Prednisone treatment. I know that can be very rough. Usually,

Prednisone treatment is limited though, not a lifetime thing unless you are

post

transplant at which point it is given in very small doses. Hopefully the

Prednisone will do its thing and get your protein levels down for you.

As to the question of pregnancy, it may be possible, but hard to say without

knowing what your levels are and what meds you are on. The best advise I

can give you there is to seek out a high risk OB, and seek their advise.

Welcome again,

In a message dated 2/22/2005 5:31:30 P.M. Pacific Standard Time,

ajjbehm@... writes:

Hi all-

I'm new to this group, so thought I'd introduce myself briefly and

ask a few questions.

I'm 24 years old and until November of 2004, I had a clean bill of

health. I first went in to see my primary care doctor when I had

unexplained severe swelling in my legs and feet. He narrowed it

down to Nephrotic Syndrome and then sent me on to a nephrologist. I

had a biopsy in December and got the diagnosis of IgA Nephropathy

just after Christmas.

They've started me out on steroid treatment (I can already tell

that's typical from what I've read so far), so I've been riding the

prednisone rollercoaster. Yuk. I went in for my first set of

solumedrol infusions in January which eventually landed me in the

hospital for a few days. I got really sick after the infusions and

couldn't keep anything down - food, fluid, or meds and ended up

severely dehydrated.

Since leaving the hospital about a month ago, things have evened out

for me, but I'm still not sure what " normal " is. Every day I wake

up and wonder if it will be a good day or not - some days I feel

completely normal, others I never get out of my pajamas - is that

typical? Does it even out after awhile or will it continue to be a

day-by-day thing?

Probably my biggest issue with this whole thing is about being able

to sustain a pregnancy at some point. My husband and I asked my

nephrologist about it and she basically said that I shouldn't be

trying to get pregnant right now, and that we'll talk more

specifically about that after my treatment. I guess I'm hoping for

some good news in that department - have some of you with this

disease been able to have kids?

Anyway, I've got to get going. I just wanted to put myself out

there. I'm glad to be in touch with other people who are or have

been in my shoes.

Report post · February 23, 2005

Hi Ajjbehm,

A very warm welcome to you. I am sorry you have IgAN and need to go through

the Prednisone treatment. I know that can be very rough. Usually,

Prednisone treatment is limited though, not a lifetime thing unless you are

post

transplant at which point it is given in very small doses. Hopefully the

Prednisone will do its thing and get your protein levels down for you.

As to the question of pregnancy, it may be possible, but hard to say without

knowing what your levels are and what meds you are on. The best advise I

can give you there is to seek out a high risk OB, and seek their advise.

Welcome again,

In a message dated 2/22/2005 5:31:30 P.M. Pacific Standard Time,

ajjbehm@... writes:

Hi all-

I'm new to this group, so thought I'd introduce myself briefly and

ask a few questions.

I'm 24 years old and until November of 2004, I had a clean bill of

health. I first went in to see my primary care doctor when I had

unexplained severe swelling in my legs and feet. He narrowed it

down to Nephrotic Syndrome and then sent me on to a nephrologist. I

had a biopsy in December and got the diagnosis of IgA Nephropathy

just after Christmas.

They've started me out on steroid treatment (I can already tell

that's typical from what I've read so far), so I've been riding the

prednisone rollercoaster. Yuk. I went in for my first set of

solumedrol infusions in January which eventually landed me in the

hospital for a few days. I got really sick after the infusions and

couldn't keep anything down - food, fluid, or meds and ended up

severely dehydrated.

Since leaving the hospital about a month ago, things have evened out

for me, but I'm still not sure what " normal " is. Every day I wake

up and wonder if it will be a good day or not - some days I feel

completely normal, others I never get out of my pajamas - is that

typical? Does it even out after awhile or will it continue to be a

day-by-day thing?

Probably my biggest issue with this whole thing is about being able

to sustain a pregnancy at some point. My husband and I asked my

nephrologist about it and she basically said that I shouldn't be

trying to get pregnant right now, and that we'll talk more

specifically about that after my treatment. I guess I'm hoping for

some good news in that department - have some of you with this

disease been able to have kids?

Anyway, I've got to get going. I just wanted to put myself out

there. I'm glad to be in touch with other people who are or have

been in my shoes.

Report post · February 23, 2005

Welcome to the group.

I was about 23 or 24 when I first had signs of IgAN, that I know of, but

unlike you, I was never " nephrotic " , which means heavy proteinuria. This is

probably why you are on the steroid treatment. Many women with IgAN have

children successfully, and it would certainly be too early to rule it out

yet... but not until you condition has stabilized. I'm sure your doctor can

revisit that issue once the proteinuria is under control and your serum

creatinine is stable. There's a little piece about pregnancy on www.igan.ca

Good luck with the treatment.

Pierre

New member

>

> Hi all-

>

> I'm new to this group, so thought I'd introduce myself briefly and

> ask a few questions.

>

> I'm 24 years old and until November of 2004, I had a clean bill of

> health. I first went in to see my primary care doctor when I had

> unexplained severe swelling in my legs and feet. He narrowed it

> down to Nephrotic Syndrome and then sent me on to a nephrologist. I

> had a biopsy in December and got the diagnosis of IgA Nephropathy

> just after Christmas.

>

> They've started me out on steroid treatment (I can already tell

> that's typical from what I've read so far), so I've been riding the

> prednisone rollercoaster. Yuk. I went in for my first set of

> solumedrol infusions in January which eventually landed me in the

> hospital for a few days. I got really sick after the infusions and

> couldn't keep anything down - food, fluid, or meds and ended up

> severely dehydrated.

>

> Since leaving the hospital about a month ago, things have evened out

> for me, but I'm still not sure what " normal " is. Every day I wake

> up and wonder if it will be a good day or not - some days I feel

> completely normal, others I never get out of my pajamas - is that

> typical? Does it even out after awhile or will it continue to be a

> day-by-day thing?

>

> Probably my biggest issue with this whole thing is about being able

> to sustain a pregnancy at some point. My husband and I asked my

> nephrologist about it and she basically said that I shouldn't be

> trying to get pregnant right now, and that we'll talk more

> specifically about that after my treatment. I guess I'm hoping for

> some good news in that department - have some of you with this

> disease been able to have kids?

>

> Anyway, I've got to get going. I just wanted to put myself out

> there. I'm glad to be in touch with other people who are or have

> been in my shoes.

>

Report post · February 23, 2005

Hi, aajbehm,

It's crazy that you wrote today, because I just joined the group

this week and I had the same treatment as you, and also the same

concerns about pregnancy.

Just like you, I've been perfectly healthy all my life until IgAN.

If you want to read my story of diagnosis, I just posted it

yesterday (to give you the quckie recap -- I was diagnosed a year

ago at 27).

I had the solumedrol IV treatment (solumedrol is the generic of

prednisolone, or the other way around, but it's the same drug). I'm

sorry you ended up in the hospital. I was able to get through it

OK, except for the side effects that I could manage the rest of the

day. My prednisone dose was pretty low (30 mg every other day), so

I didn't have days where I didn't want to get dressed, but I totally

understand how mood swings on these drugs can do that to you.

About pregnancy, my doctor told me the exact same thing, " Let's wait

until after your six-month treatment. " When that ended, he told me

pregnancy could be too much of a strain on my body. I guess I felt

all along that I knew that would be the answer, like my neph was

just trying to let me come to that realization instead of him

telling me and me being shocked and upset.

I consider myself lucky, though, because I had a baby about a year

before I was diagnosed. In all honesty, my pregnancy was fine. I

had no complications, no high blood pressure, no excessive swelling

(don't get me wrong, I had swollen feet and hands at the end, but

from what I've seen, most women do). The only thing that didn't go

perfectly for me was birth. My daughter never dropped, so I never

was dilated or showed any signs of giving birth. When I was a week

late, an ultrasound showed that my baby was big, so they didn't want

to induce me and have complications (since my body showed no signs

of being ready to give birth). I ended up having a cesarian, and

then got a staff infection and was very ill for the first few weeks

after birth. My daughter was 11 pounds, 1 ounce! I don't know if

any of this could be related to IgAN.

Other women in this group, briar6456 and W4JC, shared some info

about this yesterday and today, so I recommend you go back and read

their comments on this topic. I've found it helps to hear other

people's thoughts and experiences. Good luck!

Barb

~~~~~

>

> Hi all-

>

> I'm new to this group, so thought I'd introduce myself briefly and

> ask a few questions.

>

> I'm 24 years old and until November of 2004, I had a clean bill of

> health. I first went in to see my primary care doctor when I had

> unexplained severe swelling in my legs and feet. He narrowed it

> down to Nephrotic Syndrome and then sent me on to a nephrologist.

I

> had a biopsy in December and got the diagnosis of IgA Nephropathy

> just after Christmas.

>

> They've started me out on steroid treatment (I can already tell

> that's typical from what I've read so far), so I've been riding

the

> prednisone rollercoaster. Yuk. I went in for my first set of

> solumedrol infusions in January which eventually landed me in the

> hospital for a few days. I got really sick after the infusions

and

> couldn't keep anything down - food, fluid, or meds and ended up

> severely dehydrated.

>

> Since leaving the hospital about a month ago, things have evened

out

> for me, but I'm still not sure what " normal " is. Every day I wake

> up and wonder if it will be a good day or not - some days I feel

> completely normal, others I never get out of my pajamas - is that

> typical? Does it even out after awhile or will it continue to be

a

> day-by-day thing?

>

> Probably my biggest issue with this whole thing is about being

able

> to sustain a pregnancy at some point. My husband and I asked my

> nephrologist about it and she basically said that I shouldn't be

> trying to get pregnant right now, and that we'll talk more

> specifically about that after my treatment. I guess I'm hoping

for

> some good news in that department - have some of you with this

> disease been able to have kids?

>

> Anyway, I've got to get going. I just wanted to put myself out

> there. I'm glad to be in touch with other people who are or have

> been in my shoes.

Report post · March 11, 2005

Hi Kathy,

Welcome to the PLS group. Your progression is about the same as

mine. I already have speaking problems and have, but do not use, a

speaking divice. Hope that helps.

I am very interested in your last name, Ball. It's rare. I was a

Ball before I was married.

Donna - PLS _NC

- In PLS-FRIENDS , " Kathy " <kathyscat49@y...> wrote:

>

> Hello to everyone,

> My name is Kathy and I live in Ky. I am 55 y/o. For 1 1/2 yrs now

the

> drs have been dx me as having MND probably ALS. On march 3 I saw

> another Dr at the ALS clinic at the Univ of Ky. He has now dx as

PLS.

> But he added: since my sx started in late 2002, 2003 cane, in 2004

> added 2 afo's, bipap, p/t wc, 2005 walker and being fitted for

power

> chair next month, that my progression is happening faster than

> average. And he noted that I do have some LMN involvement which

does

> hint at ALS, not enough to dx it, but does not necessarily mean

it

> will become. I have been researching on my own, and Edith

suggested

> this group (thanks Edith). I will be going to the UK als clinic

> starting in april. Everything I have read so far indicaates that

PLS

> is about as complicated as ALS; sx can go fast/slow, etc. I do

have a

> question though (I haven't read this anywhere); if the

> speech/swallowing get bad enough (or does it get bad enough)to

ever

> warrant a communication device or peg? Thanks again for listening

> and I am sure there are just as many great people here as there

are

> at the lwals group. Its nice to meet you.

> Kathy Ball

> dx pls 3-3-05

> sx 2002

Report post · March 19, 2005

I was 38 when diagnosed.

wrote:

> Im 40 is that close enough.

> Your Friend;

>

> westernpanic wrote:

>

> Hi...I am a new member to the group. I am a 36 year old male that

> was diagnosed with PLS a little over a year ago. I was diagonsed at

> the Forbes Norris Clinic. Through all the research I have done, I

> have not been able to find another person that has been affected by

> PLS at my age. If there is anyone out there my age or knows of

> someone my age, please contact me.

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

Report post · March 20, 2005

I was also 35 when diagnosed, now 51 and still am walking, my

nuerologist says I have improved the last few years. He said if I

keep it up he'll have to write a paper up on me. My husband says it's

all the housework I do and all the stairs in our home.

Luann in NJ

>

> Hi...I am a new member to the group. I am a 36 year old male that

> was diagnosed with PLS a little over a year ago. I was diagonsed at

> the Forbes Norris Clinic. Through all the research I have done, I

> have not been able to find another person that has been affected by

> PLS at my age. If there is anyone out there my age or knows of

> someone my age, please contact me. It has been a struggle coping

> with this. I have always been a very active person. 14 years ago,

> I was playing Div 1 college basketball. I continued to play bball

> until about 8 years ago when I noticed something going on. It took

> me a while to get up the courage to go to a doctor because I knew

> something serious was going on. My new wife, the love of my life,

> gave me the courage. Here I am! I look forward to the support.

Report post · March 25, 2005

Hi

Welcome to the group. Not much I can add to what Amy already said. Some

people have more aggressive forms of IgAN, some have it so mild as to be

virtually non-existant. So, it's hard to give anyone specific information.

One thing you will learn is that in the world of chronic IgAN, and

nephrology in general, there are few emergencies until a person starts

getting close to needing dialysis. With a disease like IgAN, that could

easily be 10, 20, even 30 years, and it might even never happen in a normal

lifespan. Appointments with nephrologists aren't often scheduled on an

emergency basis, so, it's common to get an appointment a couple of months

down the road. Some people only have a once-a-year follow-up.

Everything I know about it is already written up in www.igan.ca so it's

worth a read. I took 25 years to reach dialysis from when blood was first

discovered in my urine. You can read my personal IgAN story near the bottom

of the " About us " page on www.igan.ca

By the way, you may or may not consider yourself lucky to have at least been

told the diagnosis is IgAN on the phone. Many people might have had to wait

until the May appointment to learn that. That can be a long wait...

Pierre

New Member

>

> HI, My name is , and I am from Columbus, Ohio. I

> am 37 years old. I was just diagnosed with IGA last

> Wed. I received this information over the phone, by

> my Nephrologist. He told me not to worry now, to make

> an appointment, and he would talk to me about it then.

> When I tried to schedule an appointment they said it

> would be May until they could see me. I know nothing

> about this disease. I only started researching last

> night. (Thats how I found this group) It really helps

> knowing that I am not alone out there. I guess the

> thought of it being an autoimmune disease scares me.

> Is this correct? I also have found out, when I get

> sick, I get really sick. I just had my tonsils out,

> because they thought at first I had Nephritis,

> secondary to strep throat. I had the kidney biopsy 2

> days before my tonsils were removed.

>

> Really what I want to know is it sounds like it's

> really not that serious, if you don't have high BP?

> Is that a correct assumption? I know that I have had

> a lot of blood in my urine since Jan. 2, and it is

> still there. My protein was 633, and I don't eat

> meat. I really cant understand this. (also my

> potassium has been a little high)

>

> Any little bit of information anyone can give me would

> be greatly appreciated. I am a single mother of two

> beautiful boys 12 and 14. I guess I would really like

> to know what I can do to stay healthy for them.

>

> Well, sorry to ramble. I feel so blessed to have

> found this support group.

>

> Thanks!

>

Report post · March 25, 2005