New to the group

June 17, 2004

Hi Dawn,

First let me welcome you to the group! Glad you found us, but sorry you had

reason to look for us. Your creatinine level is normal, and that is just

fantastic. If your creatinine and BP are normal, you should be in great shape.

One the pains, if it is the lower quadrant, left or right in your back, it

could be the flank pain sometimes associated with IgAN, but if it is not in your

lower back, it is probably something else. On the dark urine, is there a

reddish or tea color? If so, it could be you are spilling small amounts of

blood.

If it is just dark, but not red or tea colored, it could be dark due to not

being hydrated enough. Do you drink lots of water?

With your levels, I would doubt you have any dietary restrictions, but I have

to offer a disclaimer that none of us are doctors, and it is important not to

take any of the posts as medical advise. You might ask your Nephrologist if

your phosphorus and potassium levels are ok and if he advises any dietary

restrictions. With normal kidney function indicated by your 0.8 creatinine

level,

I doubt you need to worry about any, but it doesn't hurt to check.

No matter what your levels are though, it is important to have a Nephrologist

who you feel is supporting you through the process, and that includes

emotional as well as physical support. It is only natural to be concerned when

you

are diagnosed with any chronic illness.

Just know that you have a kidney family here who will support you through

this. We are here for you each step of the way Dawn!

Welcome again,

June 17, 2004

You are exactly correct Amy. Only a routine urine for nitrates, or urine

culture will catch an infection. Great post by the way :-)

In a message dated 6/17/2004 4:02:52 PM Pacific Daylight Time,

purr-fect@... writes:

> I don't think the 24 hour urine testing will catch an infection...although

> I

> could be wrong on that...someone correct me if I am. A routine urinalysis

> should catch white blood cells common in an infection.

June 17, 2004

I don't think pungent urine is a sign of IgAN, at least not if pungent means

a bad odour. If it just means a stronger but normal urine smell, maybe, but

a bad odour would more likely be due to infection of some kind.

Pierre

Re: new to the group

> Hello Dawn,

>

> Welcome to the group. Your neph thinking it's no big deal really

> amazes me. Maybe compared with his other patients it is no big deal

> in the state your in now, but for you it is!

>

> What I find a bit strange though is that you have smelling urine.

> It's something I at least do not recognize as common for Igan. Maybe

> anyone else in the group has any experience?

>

> I'm sure you can find a lot of information and support in this group.

>

> Doortje

>

June 17, 2004

I don't think pungent urine is a sign of IgAN, at least not if pungent means

a bad odour. If it just means a stronger but normal urine smell, maybe, but

a bad odour would more likely be due to infection of some kind.

Pierre

Re: new to the group

> Hello Dawn,

>

> Welcome to the group. Your neph thinking it's no big deal really

> amazes me. Maybe compared with his other patients it is no big deal

> in the state your in now, but for you it is!

>

> What I find a bit strange though is that you have smelling urine.

> It's something I at least do not recognize as common for Igan. Maybe

> anyone else in the group has any experience?

>

> I'm sure you can find a lot of information and support in this group.

>

> Doortje

>

June 17, 2004

I don't think pungent urine is a sign of IgAN, at least not if pungent means

a bad odour. If it just means a stronger but normal urine smell, maybe, but

a bad odour would more likely be due to infection of some kind.

Pierre

Re: new to the group

> Hello Dawn,

>

> Welcome to the group. Your neph thinking it's no big deal really

> amazes me. Maybe compared with his other patients it is no big deal

> in the state your in now, but for you it is!

>

> What I find a bit strange though is that you have smelling urine.

> It's something I at least do not recognize as common for Igan. Maybe

> anyone else in the group has any experience?

>

> I'm sure you can find a lot of information and support in this group.

>

> Doortje

>

June 17, 2004

Hello and Thank you to everyone who responded.

Amy,

Sounds like we have exactly the same pain. No one knows what it is either??

Well that makes me feel a little better to know at lease I'm not alone in

what I have been feeling. I have done a great number of 24 hour urines, I

have never been diagnosed with bladder infection. I just was wondering what

else it could be. Some one else said they didn't think is was a IGAN thing.

Maybe it's not.. Is there a better diet to eat? I saw someone else asked

that too. How do you know if your getting worse. I thought it was from the

pain (flank pain) I was experiencing but my creatine level is lower today

then two years ago. Are there other blood test they can take to make sure

I'm okay?

Dawn McReynolds

Aurora Women's Center, Inc.

Headquarters

19946 Harper

Harper Woods, MI

48225

I

Located in the Salvation Army Building

24140 Mound

Warren, MI 48091

_____

From: Amy Griswold

Sent: Thursday, June 17, 2004 2:06 PM

To: iga-nephropathy

Subject: Re: new to the group

Hi Dawn,

Welcome to the group I'm happy you found us. Your creatinine numbers

look great! I wish mine were so low. ) Have you been checked for bladder

infection? With the highly smelly urine that would be the first thing that

pops into my head. Although when you have a lot of blood in the urine it

can cause a smell like that without infection.

The pains you are having on your right side...where are they located?

Is it in your back near the base of your back. Or is it in the front area

of your body around your hip/pelvic bone area? I know a few of us, me

included, have had sharp stabbing pains on the right side in the hip

joint/pelvic area that have been unexplained by our doctors to date. Mine

come and go sometimes I go months without pain and then other months its a

daily thing. If they are occurring in your back near the base of your back

you could be experiencing flank pain, common with IgAN but not recognized as

a symptom by most doctors. The pain doesn't come from the kidneys but from

the surrounding area...perhaps due to irritation from the blood in the

urine. Not much is known about flank pain except that many people have it

in varying degrees and some never experience it.

Welcome again and I hope we can all be a source of info and aid.

Amy

new to the group

>

> Hello,

>

> My name is Dawn. I have been diagnosed with IGA for about two years now.

> Only problem is, My Neph doesn't seem to think it's a big deal. I don't

> know. My creatine level was 1.0 in 02 now it 0.8 which they say is normal.

> My bp is also always normal. However, I get these pains on my right side

all

> the time. My urine is dark all the time and most of the time has a real

> pungent smell. Can anyone tell me more about what I am feeling since my

> doctor just says. Yeah, that's normal, par for the course (what does that

> mean)? Thanks. It's awesome to have people to talk to about this. Everyone

I

> know has never even heard of it. Oh yeah. Does any one get pain through

out

> their body? I do and it's like a aching pain mostly in my arms and legs.

> Thanks

>

> Dawn

>

June 17, 2004

I don't think the 24 hour urine testing will catch an infection...although I

could be wrong on that...someone correct me if I am. A routine urinalysis

should catch white blood cells common in an infection. You might want to go

to your regular doctor and ask them about the strong smelling urine. They

may run some tests like a urine culture that your neph might not do. I know

when I had a high amount of blood in my urine (3+) it had a distinct odor

best described as a menstrual odor...you women know what I'm talking about.

Do you know what your lab values are for blood in the urine? I ask because

I wonder if it's dark colored due to blood or dark due to not drinking

enough water.

As far as knowing you are getting worse the only way to know is thru

your lab tests. Fatigue can come and go, flank pain can come and go,

feeling lousy can come and go...lab values tell all. I was feeling horrid

when my creatinine was at 1.9...this past visit I was up to 2.4 and (with

the exception of a infection in my jaw that was nearly healed) I was doing

fine feeling better than when I was at 1.9. I think most of us go thru a

period after diagnosis where we think everything is due to the IgAN and our

kidneys getting worse is the thing that flashes thru our head with every

ache and pain. It will get easier to live with as you learn more about the

disease and learn about how your body deals with it. There are a few

general symptoms as you get closer to renal failure that you can find on the

website at http://www.igan.ca But remember not everyone with IgAN will

reach end stage only 30-50% of us get to that point. You may live a long,

happy, mostly healthy life with just the addition of a few pills, some

routine lab tests and a few extra doctors visits a year. Stay positive! )

Amy

RE: new to the group

> Hello and Thank you to everyone who responded.

>

> Amy,

>

> Sounds like we have exactly the same pain. No one knows what it is

either??

> Well that makes me feel a little better to know at lease I'm not alone in

> what I have been feeling. I have done a great number of 24 hour urines, I

> have never been diagnosed with bladder infection. I just was wondering

what

> else it could be. Some one else said they didn't think is was a IGAN

thing.

> Maybe it's not.. Is there a better diet to eat? I saw someone else asked

> that too. How do you know if your getting worse. I thought it was from the

> pain (flank pain) I was experiencing but my creatine level is lower today

> then two years ago. Are there other blood test they can take to make sure

> I'm okay?

>

> Dawn McReynolds

>

June 17, 2004