Re: My story...

[Guest guest]

Welcome to the group Maurice. Nothing wrong with your English. It's very

good.

When I was in my mid-20's, like you, the whole thing started with urology,

until I eventually worked my way to a nephrologist. Yes, I had the painful

investigations also, but I was under anesthetic!

If your proteinuria numbers are correct, that would be very mild

proteinuria, sort of like I had in those early days. So, my guess is that

your nephrologist is correct in advising you that you needn't worry about it

too much at this point. If your systolic blood pressure was 140 in the

doctor's office, it may not be very high, because BP always seems higher in

the doctor's office for many people.The main thing is to ensure your blood

pressure doesn't rise gradually without you knowing about it. This is what

happened to me during the 1980's. By the time I knew I had it, it was

already severely elevated, and I've been battling it ever since. For that,

you should have it checked at least once every 3 or 4 months (no longer than

6 months anyway), and it should never be higher than 140/90, but preferably

no more than 120/80 -- when at rest.

Now, about the urinary problems - pain, difficulty urinating. Could it be

that this began after you started the blood pressure medication, or did you

have it before? I ask this because I had very similar problems caused by ACE

inhibitors, when I was on them. Did it start after you started taking

anything else, like fish oil, vitamins? Those symptoms are not usually a

result of IgAN.

Also, it's not unusual at all for a nephrologist to adopt a wait and see

attitute with regards to a biopsy. I didn't have mine until about 15 years

after the first symptoms of blood and protein in the urine appeared. The

reason for this is that if the symptoms are very mild, just about any kind

of glomerulonephritis is handled the same way: mainly blood pressure

medication (nowadays, mainly ACE inhibitors), and checking the protein and

creatinine once per year.

Getting IgA nephropathy has nothing to do with fitness. I was in the best

shape of my life when mine started.

Thanks for your compliments about the site. I'm glad you find it useful.

Pierre

(as I often said to others before, still here and not on dialysis almost 25

years later)

My story...

Hello everybody..

Excuse me for my bad English, but I'm from the Netherlands. I find

the terminology very difficult but I'll try. I'm new here and I

have read many posts the last week. Currently this is the best site

I've seen on IGA.

I'm 26 years old and I've had tea colored urine for a couple of years

now (I think). I always had it when I was feeling a bit sick and I

thought it was normal (stupid me!). I don't know how long I have this

condition but 9 mounts ago I had very dark blood in my urine (almost

black). There even was big black clot in my urine. I never knew I

could pee a thing like that! It shocked me like hell! Since that

moment I feel constant pain in the perineum area, groin and pelvis

area. So I went to the urologist and he did several (painful) tests.

He could not explain why I had blood and protein in my urine. So he

sends me to a nephrologist. When I told the story he found it very

interesting, and he mentioned a disease called IGA that had these

symptoms. I've had a view 24-hour urine tests and he also looked at

the shape of the red blood cells and told me that it came from my

kidney. He said that he was 95% certain. My protein level was first

at 0,49mg and 1 month later it was at 0,59mg. He said that I did not

have to worry yet. My blood pressure was something with 140. I don't

know anymore but he said that it could be that I was stressful. Still

he gave me something to lower the slightly elevated blood pressure.

He did not want to take a biopsy at this stage (what stage 1 or 2?).

He said that he would treat it as if it were IGA. He said that I

could still have a good life and that I don't need to worry so much

and send me home. I immediately stared searching the Internet and

became very depressed. After reading many posts and documents I

immediately started taking fish old capsules 2000mg daily on my own

initiative. I told the nephrologist and he said it was all right and

that it could not hurt me. I also take vitamin pills but I have to

say that I already feel like a walking laboratory. I don't know. I

always thought I was very healthy. I don't smoke. I rarely drink

alcohol and I don't do drugs. (I've eaten Mexican mushrooms 4 times

but don't do that anymore). And I do fitness/cardio 4 days a week for

1,5 hours for the past 4 years.

The thing that is bogging me is the pain in the groin area but my

nephrologist told me that it had nothing to do with IGA. The only

thing that I can feel is that I sometimes have puffy hands and eyes,

but it doesn't stay long. I also have a slightly annoying feeling on

the left side of my back and I'm not satisfied with my pee quality.

(I don't know how to say this, but I feel like an old man!) I think

that the pain from the groin area is caused by prostatitis or

prostatodynia but I'll see my urologist within 2 weeks. Furthermore I

have been very tired lately and so was my girlfriend. She went to see

a doctor and told her she had Pfeiffer disease.

I immediately went to the doctor and told her about it. I'm waiting

to get the results in a couple of days. I don't know how much more I

can take. I'm also seeing my nephrologist next week. Still I think

the state of mind can be a very powerful tool in many things and even

with handling IGA. I'm trying to think positive but it is very hard.

Every time I go to the toilet I am scared. There isn't a day that I

can't think of IGA and I think that it is a negative attitude and

maybe making things worse!

Thank you for starting this group. I'll let you know the results.

Maurice

[Guest guest]

He said that he would treat it as if it were IGA. He said that I could still have a good life and that I don't need to worry so much and send me home. I immediately stared searching the Internet and became very depressed.

Maurice,

Welcome to the group. Your English is just fine.

My kidney failed and I am currently on dialysis. My biggest problem is lack of energy, and I am sure that when I start exercising regularly that will diminish.

I just wanted to let you know that people do survive with kidney failure.

Mike in California

[Guest guest]

Hi Maurice, I agree with you that it is hard, and I agree that I feel like

an old woman. But I always remember a woman I used to work with whose

daughter had cancer and was very sick for several years. I remember

commenting that I thought she was coping very well, and she replied that she

had no choice she just had to. There was nothing that she could do to

change the situation only live wth it. Cold comfort but it helps me; I can

only endure with or without grace and I would much rather live with it with

grace.

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

Hey Mike.

Hope you continue to do well on dialysis. Stick around. I may need your advice about it in a couple of years.

Pierre

Oh I am definitely going to stick around, I really like this list and group of people.

And anything I can do to help, but I think that as well informed as you are you may end up knowing more than the dialysis staff.

Mike

[Guest guest]

Hey Mike.

Hope you continue to do well on dialysis. Stick around. I may need your advice about it in a couple of years.

Pierre

Re: My story...

He said that he would treat it as if it were IGA. He said that I could still have a good life and that I don't need to worry so much and send me home. I immediately stared searching the Internet and became very depressed. Maurice, Welcome to the group. Your English is just fine. My kidney failed and I am currently on dialysis. My biggest problem is lack of energy, and I am sure that when I start exercising regularly that will diminish. I just wanted to let you know that people do survive with kidney failure. Mike in California

[Guest guest]

Thank you Pierre and others for you comments. I really appreciate it

very much since most of my friends don't understand what IgAN is and

what I'm going through. I don't even know what is wrong with me and I

don't know what I can or can't do. What can I eat and drink and what

not? My nephrologist said that I should avoid salt as much as

possible.

About your question about my blood pressure medication - I had pain in

the groin area right after I urinated a big black clot. I wasn't on

any medication at the time of this occurrence. A couple of months

went by before I had my first appointment with my nephrologist. He

subscribed me an Ace Inhibitor enalapril but my body reacted abnormal

on this medicine. I couldn't breath anymore so he took me of

enalapril and subscribed me ACE Receptor blocker losartan (Cozaar).

The only thing with losartan is that I have slight palpitations of

the heart. I don't know if this is a side affect or not.

Anyway I think that IgAN was detected by coincidence but it must have

been there all along. I don't know if it is possible to urinate a big

clot caused by IgAN. I personally think that it came from the prostate

but I'm not a doctor.

I have a couple of questions maybe anybody can help and make things

clear for me since i am new with this disease.

1) I drink about 1,5 - 2 liters of water a day is that good?

2) Can IgAN cause prostatitis or prostatodynia?

3) Why does my urine turn dark when I'm sick?

4) When my urine is tea colored or red does this mean that more

irreversible damage is done to the kidney.

5) Does IgAN go away when a transplantation is done?

6) I have constant microscopic hematuria in my urine. What is the

effect on the long run? Can it cause other problems with bladder

etc.

7) I was at the point of buying a Suzuki GSX-R1000 motorcycle. Is it

wise to ride a motorcycle? What about a kidney-belt?

8) Can I drink beer with my friend and still have fun and go drunk

sometimes? (Probably not!)

I know.. Quite a few questions but maybe this group can give me some

answers and advise.

Thank you

Maurice from the Netherlands (Holland)

=====================================================================

From: " Pierre " <pgl-groups@s...>

Date: Thu Jun 7, 2001 11:06 pm

Subject: Re: My story...

Welcome to the group Maurice. Nothing wrong with your English. It's

very

good.

When I was in my mid-20's, like you, the whole thing started with

urology,

until I eventually worked my way to a nephrologist. Yes, I had the

painful

investigations also, but I was under anesthetic!

If your proteinuria numbers are correct, that would be very mild

proteinuria, sort of like I had in those early days. So, my guess is

that

your nephrologist is correct in advising you that you needn't worry

about it

too much at this point. If your systolic blood pressure was 140 in the

doctor's office, it may not be very high, because BP always seems

higher in

the doctor's office for many people.The main thing is to ensure your

blood

pressure doesn't rise gradually without you knowing about it. This is

what

happened to me during the 1980's. By the time I knew I had it, it was

already severely elevated, and I've been battling it ever since. For

that,

you should have it checked at least once every 3 or 4 months (no

longer than

6 months anyway), and it should never be higher than 140/90, but

preferably

no more than 120/80 -- when at rest.

Now, about the urinary problems - pain, difficulty urinating. Could

it be

that this began after you started the blood pressure medication, or

did you

have it before? I ask this because I had very similar problems caused

by ACE

inhibitors, when I was on them. Did it start after you started taking

anything else, like fish oil, vitamins? Those symptoms are not

usually a

result of IgAN.

Also, it's not unusual at all for a nephrologist to adopt a wait and

see

attitute with regards to a biopsy. I didn't have mine until about 15

years

after the first symptoms of blood and protein in the urine appeared.

The

reason for this is that if the symptoms are very mild, just about any

kind

of glomerulonephritis is handled the same way: mainly blood pressure

medication (nowadays, mainly ACE inhibitors), and checking the

protein and

creatinine once per year.

Getting IgA nephropathy has nothing to do with fitness. I was in the

best

shape of my life when mine started.

Thanks for your compliments about the site. I'm glad you find it

useful.

Pierre

(as I often said to others before, still here and not on dialysis

almost 25

years later)

=====================================================================

My story...

Hello everybody..

Excuse me for my bad English, but I'm from the Netherlands. I find

the terminology very difficult but I'll try. I'm new here and I

have read many posts the last week. Currently this is the best site

I've seen on IGA.

I'm 26 years old and I've had tea colored urine for a couple of years

now (I think). I always had it when I was feeling a bit sick and I

thought it was normal (stupid me!). I don't know how long I have this

condition but 9 mounts ago I had very dark blood in my urine (almost

black). There even was big black clot in my urine. I never knew I

could pee a thing like that! It shocked me like hell! Since that

moment I feel constant pain in the perineum area, groin and pelvis

area. So I went to the urologist and he did several (painful) tests.

He could not explain why I had blood and protein in my urine. So he

sends me to a nephrologist. When I told the story he found it very

interesting, and he mentioned a disease called IGA that had these

symptoms. I've had a view 24-hour urine tests and he also looked at

the shape of the red blood cells and told me that it came from my

kidney. He said that he was 95% certain. My protein level was first

at 0,49mg and 1 month later it was at 0,59mg. He said that I did not

have to worry yet. My blood pressure was something with 140. I don't

know anymore but he said that it could be that I was stressful. Still

he gave me something to lower the slightly elevated blood pressure.

He did not want to take a biopsy at this stage (what stage 1 or 2?).

He said that he would treat it as if it were IGA. He said that I

could still have a good life and that I don't need to worry so much

and send me home. I immediately stared searching the Internet and

became very depressed. After reading many posts and documents I

immediately started taking fish old capsules 2000mg daily on my own

initiative. I told the nephrologist and he said it was all right and

that it could not hurt me. I also take vitamin pills but I have to

say that I already feel like a walking laboratory. I don't know. I

always thought I was very healthy. I don't smoke. I rarely drink

alcohol and I don't do drugs. (I've eaten Mexican mushrooms 4 times

but don't do that anymore). And I do fitness/cardio 4 days a week for

1,5 hours for the past 4 years.

The thing that is bogging me is the pain in the groin area but my

nephrologist told me that it had nothing to do with IGA. The only

thing that I can feel is that I sometimes have puffy hands and eyes,

but it doesn't stay long. I also have a slightly annoying feeling on

the left side of my back and I'm not satisfied with my pee quality.

(I don't know how to say this, but I feel like an old man!) I think

that the pain from the groin area is caused by prostatitis or

prostatodynia but I'll see my urologist within 2 weeks. Furthermore I

have been very tired lately and so was my girlfriend. She went to see

a doctor and told her she had Pfeiffer disease.

I immediately went to the doctor and told her about it. I'm waiting

to get the results in a couple of days. I don't know how much more I

can take. I'm also seeing my nephrologist next week. Still I think

the state of mind can be a very powerful tool in many things and even

with handling IGA. I'm trying to think positive but it is very hard.

Every time I go to the toilet I am scared. There isn't a day that I

can't think of IGA and I think that it is a negative attitude and

maybe making things worse!

Thank you for starting this group. I'll let you know the results.

Maurice

[Guest guest]

Hi Maurice, sounds like you have been through ALOT. It is scary to see tea

colored and almost black urine. My 8 yr old son had a biopsy last month and

he has IGA. It seemed like everytime my son would have dark colored urine I

would rush to call the neph or get on here and bug everyone. But come to

find out its not really the blood that causes the most damage, its the

protein, what you can't see. The way people explained it to me was it only

takes a drop of blood to make a gallon of water discolored.

Your protein doesn't sound real high, my sons was 1.8 grams in 24 hr that is

why they chose to do the biopsy.

My son doesn't urinate much and he gets tired easily from time to time, that

seems like part of the IGA.

I think you sound pretty stable, please try to stay positive, its the best

thing you can do right now.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Here are some answers that may be of help Maurice. If your doctor said or

says anything different, obviously, he or she would know better than I.

Re: My story...

> My nephrologist said that I should avoid salt as much as

> possible.

This will help keep the blood pressure down, and it would help with any

edema (if you had any). If you were to be on prednisone, then no salt would

be necessary because steroids make the kidneys conserve sodium. Avoiding

salt probably does little that affects the IgAN process itself. It's really

just a matter of blood pressure. It's probably not necessary to go to

extremes about it.

> About your question about my blood pressure medication - I had pain in

> the groin area right after I urinated a big black clot. I wasn't on

> any medication at the time of this occurrence. A couple of months

> went by before I had my first appointment with my nephrologist. He

> subscribed me an Ace Inhibitor enalapril but my body reacted abnormal

> on this medicine. I couldn't breath anymore so he took me of

> enalapril and subscribed me ACE Receptor blocker losartan (Cozaar).

> The only thing with losartan is that I have slight palpitations of

> the heart. I don't know if this is a side affect or not.

Funny, I had trouble breathing on enalapril also. They consider me

officially allergic to ACE inhibitors. I had trouble breathing with

enalapril. Then they tried ramipril (another ACE inhibitor), and I had a

full-blown anaphylactic reaction. I've tried Cozaar, but it wasn't very

effective for me. I now take irbesartan, which is similar to losartan. I

have to say that it causes occasional palpitations for me also, but I've

been told it's nothing to worry about.

>

> Anyway I think that IgAN was detected by coincidence but it must have

> been there all along. I don't know if it is possible to urinate a big

> clot caused by IgAN. I personally think that it came from the prostate

> but I'm not a doctor.

Many of us, including myself, have had their IgAN discovered by coincidence.

I've only heard recently in this group that it's possible to pee a blood

clot after having a kidney biopsy. I seem to recall that it is possible,

although very rare, for people with IgAN to pass tiny blood clots. Red blood

cells get pressed together as they pass through the renal tubules, and

sometimes they can clump together to form tiny little blood clots.

>

> I have a couple of questions maybe anybody can help and make things

> clear for me since i am new with this disease.

>

> 1) I drink about 1,5 - 2 liters of water a day is that good?

The normal rule of thumb is that, unless your nephrologist tells you

otherwise (for example, if you retain a lot of fluids), you should drink

normally. A couple of litres doesn't sound like it's too much. It takes

fairly advanced renal failure for the kidneys not to be able to keep up with

eliminating a normal intake of fluids. Drinking unusually large amounts of

water will only make you urinate more. It doesn't really help the kidneys.

> 2) Can IgAN cause prostatitis or prostatodynia?

Not that I know of.

> 3) Why does my urine turn dark when I'm sick?

It's an inflammatory response in the glomeruli that causes a tiny amount of

blood to leak into the urine, presumably due to a sudden increase in

circulating IgA, but nobody knows exactly why this happens.

> 4) When my urine is tea colored or red does this mean that more

> irreversible damage is done to the kidney.

No, at least, not as far as we know. Heavy proteinuria is much more

damaging.

> 5) Does IgAN go away when a transplantation is done?

No. The problem with the IgA antibodies re-occurs in the new kidney, but

most often to a much lesser, milder extent. The cause of IgAN is apparently

an abnormality with the IgA immune complexes themselves, and not really a

problem inside the kidneys.

> 6) I have constant microscopic hematuria in my urine. What is the

> effect on the long run? Can it cause other problems with bladder

> etc.

It's not certain what the effect of micro-hematuria is in the long run.

Until recently, they always thought that people who only have micro, and

NEVER macro-hematuria didn't do as well in the long run. But it's hard to

say. No, I don't think it can cause problems elsewhere. Proteinuria is

thought to be much more directly damaging to the kidneys than hematuria is.

I've had micro-hematuria since 1977, and it has only recently become

apparent that I will need dialysis within a couple of years.

> 7) I was at the point of buying a Suzuki GSX-R1000 motorcycle. Is it

> wise to ride a motorcycle? What about a kidney-belt?

Shouldn't be a problem. I would have one myself (a Harley Sportster) even

now, if I could afford one, and if the cost of insurance for motorcycles

here wasn't so outrageous.

> 8) Can I drink beer with my friend and still have fun and go drunk

> sometimes? (Probably not!)

Unless your doctor says not to, you can drink a beer or two with your

friends, in my opinion, but I wouldn't overdo it, and I certainly would

avoid any binge drinking. As I've stated on this group before, my previous

nephrologist even encouraged drinking one beer per day as being healthy for

the kidneys. Starting in 1992, I always limited myself to two. I would just

drink more slowly, so while the other guys had time to drink four, I was

still on my second one : )

One thing to be careful about, however, is that alcohol can add to the blood

pressure lowering effect of blood pressure medications.

> I know.. Quite a few questions but maybe this group can give me some

> answers and advise.

>

> Thank you

>

> Maurice from the Netherlands (Holland)

Hope this helps.

Pierre, Canada

[Guest guest]

Thank you Pierre for your extensive answers on all of my questions

on such a short notice. Since this disease is so uncommon I felt

isolated but now that I've found this group I feel much better.

I keep on watching the group daily now. Keep up the good work!

Maurice

===============================================================

> Here are some answers that may be of help Maurice. If your doctor

said or

> says anything different, obviously, he or she would know better

than I.

>

> Re: My story...

>

>

> > My nephrologist said that I should avoid salt as much as

> > possible.

>

> This will help keep the blood pressure down, and it would help with

any

> edema (if you had any). If you were to be on prednisone, then no

salt would

> be necessary because steroids make the kidneys conserve sodium.

Avoiding

> salt probably does little that affects the IgAN process itself.

It's really

> just a matter of blood pressure. It's probably not necessary to go

to

> extremes about it.

>

>

> > About your question about my blood pressure medication - I had

pain in

> > the groin area right after I urinated a big black clot. I wasn't

on

> > any medication at the time of this occurrence. A couple of months

> > went by before I had my first appointment with my nephrologist. He

> > subscribed me an Ace Inhibitor enalapril but my body reacted

abnormal

> > on this medicine. I couldn't breath anymore so he took me of

> > enalapril and subscribed me ACE Receptor blocker losartan

(Cozaar).

> > The only thing with losartan is that I have slight palpitations of

> > the heart. I don't know if this is a side affect or not.

>

> Funny, I had trouble breathing on enalapril also. They consider me

> officially allergic to ACE inhibitors. I had trouble breathing with

> enalapril. Then they tried ramipril (another ACE inhibitor), and I

had a

> full-blown anaphylactic reaction. I've tried Cozaar, but it wasn't

very

> effective for me. I now take irbesartan, which is similar to

losartan. I

> have to say that it causes occasional palpitations for me also, but

I've

> been told it's nothing to worry about.

>

>

> >

> > Anyway I think that IgAN was detected by coincidence but it must

have

> > been there all along. I don't know if it is possible to urinate a

big

> > clot caused by IgAN. I personally think that it came from the

prostate

> > but I'm not a doctor.

>

> Many of us, including myself, have had their IgAN discovered by

coincidence.

> I've only heard recently in this group that it's possible to pee a

blood

> clot after having a kidney biopsy. I seem to recall that it is

possible,

> although very rare, for people with IgAN to pass tiny blood clots.

Red blood

> cells get pressed together as they pass through the renal tubules,

and

> sometimes they can clump together to form tiny little blood clots.

>

> >

> > I have a couple of questions maybe anybody can help and make

things

> > clear for me since i am new with this disease.

> >

> > 1) I drink about 1,5 - 2 liters of water a day is that good?

>

> The normal rule of thumb is that, unless your nephrologist tells you

> otherwise (for example, if you retain a lot of fluids), you should

drink

> normally. A couple of litres doesn't sound like it's too much. It

takes

> fairly advanced renal failure for the kidneys not to be able to

keep up with

> eliminating a normal intake of fluids. Drinking unusually large

amounts of

> water will only make you urinate more. It doesn't really help the

kidneys.

>

> > 2) Can IgAN cause prostatitis or prostatodynia?

>

> Not that I know of.

>

> > 3) Why does my urine turn dark when I'm sick?

>

> It's an inflammatory response in the glomeruli that causes a tiny

amount of

> blood to leak into the urine, presumably due to a sudden increase in

> circulating IgA, but nobody knows exactly why this happens.

>

> > 4) When my urine is tea colored or red does this mean that more

> > irreversible damage is done to the kidney.

>

> No, at least, not as far as we know. Heavy proteinuria is much more

> damaging.

>

> > 5) Does IgAN go away when a transplantation is done?

>

> No. The problem with the IgA antibodies re-occurs in the new

kidney, but

> most often to a much lesser, milder extent. The cause of IgAN is

apparently

> an abnormality with the IgA immune complexes themselves, and not

really a

> problem inside the kidneys.

>

> > 6) I have constant microscopic hematuria in my urine. What is the

> > effect on the long run? Can it cause other problems with

bladder

> > etc.

>

> It's not certain what the effect of micro-hematuria is in the long

run.

> Until recently, they always thought that people who only have

micro, and

> NEVER macro-hematuria didn't do as well in the long run. But it's

hard to

> say. No, I don't think it can cause problems elsewhere. Proteinuria

is

> thought to be much more directly damaging to the kidneys than

hematuria is.

> I've had micro-hematuria since 1977, and it has only recently become

> apparent that I will need dialysis within a couple of years.

>

>

> > 7) I was at the point of buying a Suzuki GSX-R1000 motorcycle.

Is it

> > wise to ride a motorcycle? What about a kidney-belt?

>

> Shouldn't be a problem. I would have one myself (a Harley

Sportster) even

> now, if I could afford one, and if the cost of insurance for

motorcycles

> here wasn't so outrageous.

>

> > 8) Can I drink beer with my friend and still have fun and go

drunk

> > sometimes? (Probably not!)

>

> Unless your doctor says not to, you can drink a beer or two with

your

> friends, in my opinion, but I wouldn't overdo it, and I certainly

would

> avoid any binge drinking. As I've stated on this group before, my

previous

> nephrologist even encouraged drinking one beer per day as being

healthy for

> the kidneys. Starting in 1992, I always limited myself to two. I

would just

> drink more slowly, so while the other guys had time to drink four,

I was

> still on my second one : )

>

> One thing to be careful about, however, is that alcohol can add to

the blood

> pressure lowering effect of blood pressure medications.

>

>

> > I know.. Quite a few questions but maybe this group can give me

some

> > answers and advise.

> >

> > Thank you

> >

> > Maurice from the Netherlands (Holland)

>

>

> Hope this helps.

> Pierre, Canada

[Guest guest]

Hoi Maurice!!!

Eindelijk iemand uit Nederland die ons clubje heeft gevonden!

Welcome to the group. I think you will find a lot of support here. Pierre is

like a godfather of IGAN.

My fiance Haiko is of about the same age as you, he's 27. He isn't very

interested in his condition, he calls it my hobby. Well so be it. But he

recognises a lot of things you wrote.

By the way, from wich part of the netherlands are you? We live in the

north, in Drachten Friesland.

Groetjes, Haiko en Mariëtte

(PS. to all the others: sorry for my dutch I couldn't help myself LOL)

My story...

> Hello everybody..

>

> Excuse me for my bad English, but I'm from the Netherlands. I find

> the terminology very difficult but I'll try. I'm new here and I

> have read many posts the last week. Currently this is the best site

> I've seen on IGA.

>

> I'm 26 years old and I've had tea colored urine for a couple of years

> now (I think). I always had it when I was feeling a bit sick and I

> thought it was normal (stupid me!). I don't know how long I have this

> condition but 9 mounts ago I had very dark blood in my urine (almost

> black). There even was big black clot in my urine. I never knew I

> could pee a thing like that! It shocked me like hell! Since that

> moment I feel constant pain in the perineum area, groin and pelvis

> area. So I went to the urologist and he did several (painful) tests.

>

> He could not explain why I had blood and protein in my urine. So he

> sends me to a nephrologist. When I told the story he found it very

> interesting, and he mentioned a disease called IGA that had these

> symptoms. I've had a view 24-hour urine tests and he also looked at

> the shape of the red blood cells and told me that it came from my

> kidney. He said that he was 95% certain. My protein level was first

> at 0,49mg and 1 month later it was at 0,59mg. He said that I did not

> have to worry yet. My blood pressure was something with 140. I don't

> know anymore but he said that it could be that I was stressful. Still

> he gave me something to lower the slightly elevated blood pressure.

> He did not want to take a biopsy at this stage (what stage 1 or 2?).

>

> He said that he would treat it as if it were IGA. He said that I

> could still have a good life and that I don't need to worry so much

> and send me home. I immediately stared searching the Internet and

> became very depressed. After reading many posts and documents I

> immediately started taking fish old capsules 2000mg daily on my own

> initiative. I told the nephrologist and he said it was all right and

> that it could not hurt me. I also take vitamin pills but I have to

> say that I already feel like a walking laboratory. I don't know. I

> always thought I was very healthy. I don't smoke. I rarely drink

> alcohol and I don't do drugs. (I've eaten Mexican mushrooms 4 times

> but don't do that anymore). And I do fitness/cardio 4 days a week for

> 1,5 hours for the past 4 years.

>

> The thing that is bogging me is the pain in the groin area but my

> nephrologist told me that it had nothing to do with IGA. The only

> thing that I can feel is that I sometimes have puffy hands and eyes,

> but it doesn't stay long. I also have a slightly annoying feeling on

> the left side of my back and I'm not satisfied with my pee quality.

> (I don't know how to say this, but I feel like an old man!) I think

> that the pain from the groin area is caused by prostatitis or

> prostatodynia but I'll see my urologist within 2 weeks. Furthermore I

> have been very tired lately and so was my girlfriend. She went to see

> a doctor and told her she had Pfeiffer disease.

>

> I immediately went to the doctor and told her about it. I'm waiting

> to get the results in a couple of days. I don't know how much more I

> can take. I'm also seeing my nephrologist next week. Still I think

> the state of mind can be a very powerful tool in many things and even

> with handling IGA. I'm trying to think positive but it is very hard.

> Every time I go to the toilet I am scared. There isn't a day that I

> can't think of IGA and I think that it is a negative attitude and

> maybe making things worse!

>

> Thank you for starting this group. I'll let you know the results.

>

> Maurice

>

>

>

>

[Guest guest]

Godfather eh? I almost missed that after the Dutch!

Thanks for the compliment, but I only know what I've experienced.

Pierre

My story...

>

>

> > Hello everybody..

> >

> > Excuse me for my bad English, but I'm from the Netherlands. I find

> > the terminology very difficult but I'll try. I'm new here and I

> > have read many posts the last week. Currently this is the best site

> > I've seen on IGA.

> >

> > I'm 26 years old and I've had tea colored urine for a couple of years

> > now (I think). I always had it when I was feeling a bit sick and I

> > thought it was normal (stupid me!). I don't know how long I have this

> > condition but 9 mounts ago I had very dark blood in my urine (almost

> > black). There even was big black clot in my urine. I never knew I

> > could pee a thing like that! It shocked me like hell! Since that

> > moment I feel constant pain in the perineum area, groin and pelvis

> > area. So I went to the urologist and he did several (painful) tests.

> >

> > He could not explain why I had blood and protein in my urine. So he

> > sends me to a nephrologist. When I told the story he found it very

> > interesting, and he mentioned a disease called IGA that had these

> > symptoms. I've had a view 24-hour urine tests and he also looked at

> > the shape of the red blood cells and told me that it came from my

> > kidney. He said that he was 95% certain. My protein level was first

> > at 0,49mg and 1 month later it was at 0,59mg. He said that I did not

> > have to worry yet. My blood pressure was something with 140. I don't

> > know anymore but he said that it could be that I was stressful. Still

> > he gave me something to lower the slightly elevated blood pressure.

> > He did not want to take a biopsy at this stage (what stage 1 or 2?).

> >

> > He said that he would treat it as if it were IGA. He said that I

> > could still have a good life and that I don't need to worry so much

> > and send me home. I immediately stared searching the Internet and

> > became very depressed. After reading many posts and documents I

> > immediately started taking fish old capsules 2000mg daily on my own

> > initiative. I told the nephrologist and he said it was all right and

> > that it could not hurt me. I also take vitamin pills but I have to

> > say that I already feel like a walking laboratory. I don't know. I

> > always thought I was very healthy. I don't smoke. I rarely drink

> > alcohol and I don't do drugs. (I've eaten Mexican mushrooms 4 times

> > but don't do that anymore). And I do fitness/cardio 4 days a week for

> > 1,5 hours for the past 4 years.

> >

> > The thing that is bogging me is the pain in the groin area but my

> > nephrologist told me that it had nothing to do with IGA. The only

> > thing that I can feel is that I sometimes have puffy hands and eyes,

> > but it doesn't stay long. I also have a slightly annoying feeling on

> > the left side of my back and I'm not satisfied with my pee quality.

> > (I don't know how to say this, but I feel like an old man!) I think

> > that the pain from the groin area is caused by prostatitis or

> > prostatodynia but I'll see my urologist within 2 weeks. Furthermore I

> > have been very tired lately and so was my girlfriend. She went to see

> > a doctor and told her she had Pfeiffer disease.

> >

> > I immediately went to the doctor and told her about it. I'm waiting

> > to get the results in a couple of days. I don't know how much more I

> > can take. I'm also seeing my nephrologist next week. Still I think

> > the state of mind can be a very powerful tool in many things and even

> > with handling IGA. I'm trying to think positive but it is very hard.

> > Every time I go to the toilet I am scared. There isn't a day that I

> > can't think of IGA and I think that it is a negative attitude and

> > maybe making things worse!

> >

> > Thank you for starting this group. I'll let you know the results.

> >

> > Maurice

> >

> >

> >

> >