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RE: Symptoms?

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Yeah yeah Sally, you have done physio rounds as well then!!!! They must

have sheet they follow codes on, kidney disease = flank pain=no such

thing, so physio or back problem then!!!!

My urologist and nephrologist do speak to each other luckily, but they

don't seem to agree, which for last year has left me in the middle in

pain and thoroughly cheesed off.

Pierre you are spot on with your description on Nephs and Urologists,

they for the most part, seem to be at odds with each other. I consider

I have had to renograms unnecessarily because of this sigh!!! Flank

pain maybe a combination of many things, but I have no doubt in my mind

at least, that it is related to IGAN, contentious I know, but that is my

thoughts. I for one would love to be proved wrong.

Hope all is well with you Pierre, we must have a chat soon !

Love

Re: Re: Symptoms?

On the subject of pain, I know many of you are suffering with it, but

the

fact remains that there are no pain nerves in the area of the

glomeruli,

where IgAN does its dirty work. If the pain is from the kidneys, it's

not

from the nephrons. If the kidneys are inflamed and enlarged, then pain

is

more likely to be from stretching of the capsule that surrounds the

kidneys.

Beyond that, I can't think of anything other than perhaps irritation

of

the

urinary tract, or something totally unrelated. I will never forget the

one

period many years ago now, during which I though I actually was having

very

bad flank pain. Of course, I was sure it was the kidney, but it turned

out

to be gallstones, and I eventually had surgery for that. Another time,

I

had

pain which I felt was in my back, on both sides, but that turned out

to be

a

case of pancreatitis.

If you do have chronic pain, don't expect a nephrologist to follow

that up

unless it's clearly from the kidneys. They may express some mild

interest

in

it, but any nephrologist I've ever known is only interested

specifically

in

renal insufficiency. They don't even care very much about the urinary

system

in general, as that is more of a urologist's concern. There's always a

chance it could be something else, and an internist is probably a

better

doctor to look at the problem. Sometimes to the desperation of the

patient,

a nephrologist is about as specialized and focussed as it gets -

kidney

function and dialysis.

Pain after eating is really suggestive of something other than the

kidneys.

Pierre

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Hey Dave,

On that pain after eating, many of us have had gallstones, myself included

and that sounds more like that pain especially if it is worse after eating.

Please do have your doctor pursue it.

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Sorry Dave,

I meant ! Can I plead to fuzzy thinking with this terrible flu bug?

:-) If not, then I guess I will be left with no other choice than to admit I

am human and make mistakes :-) so much for being perfect :-)

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Pierre,

Where does the pain relating to kidney stones come from then?

Dave

Re: Re: Symptoms?

On the subject of pain, I know many of you are suffering with it, but the

fact remains that there are no pain nerves in the area of the glomeruli,

where IgAN does its dirty work. If the pain is from the kidneys, it's not

from the nephrons. If the kidneys are inflamed and enlarged, then pain is

more likely to be from stretching of the capsule that surrounds the kidneys.

Beyond that, I can't think of anything other than perhaps irritation of the

urinary tract, or something totally unrelated. I will never forget the one

period many years ago now, during which I though I actually was having very

bad flank pain. Of course, I was sure it was the kidney, but it turned out

to be gallstones, and I eventually had surgery for that. Another time, I had

pain which I felt was in my back, on both sides, but that turned out to be a

case of pancreatitis.

If you do have chronic pain, don't expect a nephrologist to follow that up

unless it's clearly from the kidneys. They may express some mild interest in

it, but any nephrologist I've ever known is only interested specifically in

renal insufficiency. They don't even care very much about the urinary system

in general, as that is more of a urologist's concern. There's always a

chance it could be something else, and an internist is probably a better

doctor to look at the problem. Sometimes to the desperation of the patient,

a nephrologist is about as specialized and focussed as it gets - kidney

function and dialysis.

Pain after eating is really suggestive of something other than the kidneys.

Pierre

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Hi Dave

As far as I know:

Stones can obstruct the renal ducts, or become lodged in the ureters, the

long, narrow ducts that carry urine from the kidneys to the bladder. This is

all downstream from the nephrons, which are the site of glomerular disease.

When the obstruction is in the renal ducts, it can cause stretching of the

renal capsule (this can cause severe flank pain, and it's the same thing

that is suspected to be causing pain with IgAN and other kidney diseases,

although probably to a much lesser degree). Or the pain can be from wherever

the stones are lodged in the ureter.

I'm lucky I've never really had bad flank pain, but I sympathize with those

who do. Sympathize is about all anyone can do, including the doctors,

because non-steroidal painkillers aren't likely to be prescribed for

continuous use in the presence of chronic kidney disease.

Pierre

PS I've heard people actually scream in pain from stones, but so far, I

haven't heard any from IgAN. Of course, I may not have been at the right

place at the right time :)

Re: Re: Symptoms?

>

>

> On the subject of pain, I know many of you are suffering with it, but

the

> fact remains that there are no pain nerves in the area of the glomeruli,

> where IgAN does its dirty work. If the pain is from the kidneys, it's

not

> from the nephrons. If the kidneys are inflamed and enlarged, then pain

is

> more likely to be from stretching of the capsule that surrounds the

kidneys.

>

> Beyond that, I can't think of anything other than perhaps irritation of

the

> urinary tract, or something totally unrelated. I will never forget the

one

> period many years ago now, during which I though I actually was having

very

> bad flank pain. Of course, I was sure it was the kidney, but it turned

out

> to be gallstones, and I eventually had surgery for that. Another time, I

had

> pain which I felt was in my back, on both sides, but that turned out to

be a

> case of pancreatitis.

>

> If you do have chronic pain, don't expect a nephrologist to follow that

up

> unless it's clearly from the kidneys. They may express some mild

interest in

> it, but any nephrologist I've ever known is only interested specifically

in

> renal insufficiency. They don't even care very much about the urinary

system

> in general, as that is more of a urologist's concern. There's always a

> chance it could be something else, and an internist is probably a better

> doctor to look at the problem. Sometimes to the desperation of the

patient,

> a nephrologist is about as specialized and focussed as it gets - kidney

> function and dialysis.

>

> Pain after eating is really suggestive of something other than the

kidneys.

>

> Pierre

>

>

> ----------

>

> Outgoing mail is certified Virus Free.

> Checked by AVG Anti-Virus (http://www.grisoft.com).

> Version: 7.0.209 / Virus Database: 261.5.4 - Release Date: 26/12/2003

>

>

>

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Thanks for that , I will do - I think also ... I think it was Pierre who

said ... when you are newly diagnosed with a chronic illness, you listen more

and notice every ache and pain around - and automatically try and associate it.

I think this is absolutely correct for me at the moment, whereas before , I

would get the odd niggle here and there - age is catching up on me!! - but I

wouldn't really pay any heed to it. Paranoia perhaps? *looks over shoulder*

The pain you describe just after you've eaten seem a strange one to be related

to IgAN - I assume you've discussed with your Doc?

Dave

Re: Symptoms?

Dave...

I have had Igan for 28 years or so I have to deal with kidney (flank)

pain everyday.My pain is severe most of the time.Everytime I eat the

sharp stabbing pains start.Some of the sharp pains can take my breath

away.My kidneys are 3 centimeters larger than normal and may have

something to do with my pain.Playing golf or other activities raises

the pain levels too! I have tried 2 nerve blocks (numbing solution

injected into spinal area) to try and block the pain,with no success.

I have been taking pain meds (Lortab) for 8 years 4 times a day.

Without it I would not be able to function.

My job requires me to work shift work..3 weeks days--3 weeks

nights.This is very hard on my system especially my kidneys.

This pain is Igan related but any other pain that you spoke of

should not be. I cannot complain though because I am still NOT on

dialysis.I would have the other pain you have checked out.

I hope this helps.

----------

Outgoing mail is certified Virus Free.

Checked by AVG Anti-Virus (http://www.grisoft.com).

Version: 7.0.209 / Virus Database: 261.5.4 - Release Date: 26/12/2003

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My father suffered from bouts of Pancreatitis and i seem to recall the pain

being really severe!

Re: Re: Symptoms?

I don't know . I'm sure they must already have looked at all the

possibilities. Pancreatitis is easily diagnosed by a simple blood test (at

least initially), and gallbladder problems usually by an abdominal

ultrasound, and sometimes a nuclear scan to see what happens when you eat. I

remember sitting in a hospital corridor eating a hospital meal when I wasn't

hungry just for the test :)

Don't get me wrong though. I certainly sympathize with you and everyone else

who is having this flank pain. When you eat something, there's really not

much different that happens in the kidneys. They just continue filtering

your blood 24 hours a day.

Pierre

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,

It was who described pain after eating, I was replying to him because it

did seem a little unusual!

Dave

Re: Re: Symptoms?

Hey Dave,

On that pain after eating, many of us have had gallstones, myself included

and that sounds more like that pain especially if it is worse after eating.

Please do have your doctor pursue it.

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Thanks Pierre, thinking about it I should have realised that I guess though what

was surprising me about it was that some parts of the kidney can cause pain and

others not?

yep, I've seen kidney stones in action too!

Dave

---- Original Message -----

From: Pierre L (groups)

To: iga-nephropathy

Sent: Monday, December 29, 2003 7:07 PM

Subject: Re: Re: Symptoms?

Hi Dave

As far as I know:

Stones can obstruct the renal ducts, or become lodged in the ureters, the

long, narrow ducts that carry urine from the kidneys to the bladder. This is

all downstream from the nephrons, which are the site of glomerular disease.

When the obstruction is in the renal ducts, it can cause stretching of the

renal capsule (this can cause severe flank pain, and it's the same thing

that is suspected to be causing pain with IgAN and other kidney diseases,

although probably to a much lesser degree). Or the pain can be from wherever

the stones are lodged in the ureter.

I'm lucky I've never really had bad flank pain, but I sympathize with those

who do. Sympathize is about all anyone can do, including the doctors,

because non-steroidal painkillers aren't likely to be prescribed for

continuous use in the presence of chronic kidney disease.

Pierre

PS I've heard people actually scream in pain from stones, but so far, I

haven't heard any from IgAN. Of course, I may not have been at the right

place at the right time :)

----------

Outgoing mail is certified Virus Free.

Checked by AVG Anti-Virus (http://www.grisoft.com).

Version: 7.0.209 / Virus Database: 261.5.4 - Release Date: 26/12/2003

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Yeah my father was a typical Scot - bigger than me - fairly muscular from being

a carpenter and a Man's Man - yet it reduced him to his knees when he had it -

nasty!

Dave

Re: Re: Symptoms?

The pain of pancreatitis is as bad as or worse than labor pains! Worst I

have ever felt in my entire life. There is no mistaking that pain at all.

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That's ok - you're a lot closer to perfect than I ;o)

Re: Re: Symptoms?

Sorry Dave,

I meant ! Can I plead to fuzzy thinking with this terrible flu bug?

:-) If not, then I guess I will be left with no other choice than to admit I

am human and make mistakes :-) so much for being perfect :-)

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Dave,

Yes I have discussed the pain after eating but they don't seem to

care.This is not the only pain.I feel like I have softballs shoved

in my flank area.Since my kidneys are 3 centimeters larger from the

swelling they think that they rubbing other areas inside.

I have not had an ultrasound to look at my kidneys for 5 years.They

may be more enlarged since then.

The only way to obtain pain meds was to go to the pain clinic and

let them try other methods first.

A TENS unit and nerve blocks did not help.Having to live with pain

sucks!!

> Thanks for that , I will do - I think also ... I think it

was Pierre who said ... when you are newly diagnosed with a chronic

illness, you listen more and notice every ache and pain around - and

automatically try and associate it. I think this is absolutely

correct for me at the moment, whereas before , I would get the odd

niggle here and there - age is catching up on me!! - but I wouldn't

really pay any heed to it. Paranoia perhaps? *looks over shoulder*

>

> The pain you describe just after you've eaten seem a strange one

to be related to IgAN - I assume you've discussed with your Doc?

>

> Dave

> Re: Symptoms?

>

>

>

> Dave...

>

> I have had Igan for 28 years or so I have to deal with kidney

(flank)

> pain everyday.My pain is severe most of the time.Everytime I eat

the

> sharp stabbing pains start.Some of the sharp pains can take my

breath

> away.My kidneys are 3 centimeters larger than normal and may

have

> something to do with my pain.Playing golf or other activities

raises

> the pain levels too! I have tried 2 nerve blocks (numbing

solution

> injected into spinal area) to try and block the pain,with no

success.

> I have been taking pain meds (Lortab) for 8 years 4 times a day.

> Without it I would not be able to function.

> My job requires me to work shift work..3 weeks days--3 weeks

> nights.This is very hard on my system especially my kidneys.

> This pain is Igan related but any other pain that you spoke of

> should not be. I cannot complain though because I am still NOT

on

> dialysis.I would have the other pain you have checked out.

> I hope this helps.

>

>

>

> ----------

>

> Outgoing mail is certified Virus Free.

> Checked by AVG Anti-Virus (http://www.grisoft.com).

> Version: 7.0.209 / Virus Database: 261.5.4 - Release Date:

26/12/2003

>

>

>

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Share on other sites

Dave,

Yes I have discussed the pain after eating but they don't seem to

care.This is not the only pain.I feel like I have softballs shoved

in my flank area.Since my kidneys are 3 centimeters larger from the

swelling they think that they rubbing other areas inside.

I have not had an ultrasound to look at my kidneys for 5 years.They

may be more enlarged since then.

The only way to obtain pain meds was to go to the pain clinic and

let them try other methods first.

A TENS unit and nerve blocks did not help.Having to live with pain

sucks!!

> Thanks for that , I will do - I think also ... I think it

was Pierre who said ... when you are newly diagnosed with a chronic

illness, you listen more and notice every ache and pain around - and

automatically try and associate it. I think this is absolutely

correct for me at the moment, whereas before , I would get the odd

niggle here and there - age is catching up on me!! - but I wouldn't

really pay any heed to it. Paranoia perhaps? *looks over shoulder*

>

> The pain you describe just after you've eaten seem a strange one

to be related to IgAN - I assume you've discussed with your Doc?

>

> Dave

> Re: Symptoms?

>

>

>

> Dave...

>

> I have had Igan for 28 years or so I have to deal with kidney

(flank)

> pain everyday.My pain is severe most of the time.Everytime I eat

the

> sharp stabbing pains start.Some of the sharp pains can take my

breath

> away.My kidneys are 3 centimeters larger than normal and may

have

> something to do with my pain.Playing golf or other activities

raises

> the pain levels too! I have tried 2 nerve blocks (numbing

solution

> injected into spinal area) to try and block the pain,with no

success.

> I have been taking pain meds (Lortab) for 8 years 4 times a day.

> Without it I would not be able to function.

> My job requires me to work shift work..3 weeks days--3 weeks

> nights.This is very hard on my system especially my kidneys.

> This pain is Igan related but any other pain that you spoke of

> should not be. I cannot complain though because I am still NOT

on

> dialysis.I would have the other pain you have checked out.

> I hope this helps.

>

>

>

> ----------

>

> Outgoing mail is certified Virus Free.

> Checked by AVG Anti-Virus (http://www.grisoft.com).

> Version: 7.0.209 / Virus Database: 261.5.4 - Release Date:

26/12/2003

>

>

>

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Hi ,

I can't even imagine living with pain and I'm sorry you have to! I'm a new hand

at all this stuff but I think if I had symptoms " they " didn't care about, I'd

try and make them care lol - I'm sure you've done this too - I guess when it's

something not usual to the normal IgAN Symptoms though, would make me more

determined to try and find a cause?

Dave

Re: Symptoms?

>

>

>

> Dave...

>

> I have had Igan for 28 years or so I have to deal with kidney

(flank)

> pain everyday.My pain is severe most of the time.Everytime I eat

the

> sharp stabbing pains start.Some of the sharp pains can take my

breath

> away.My kidneys are 3 centimeters larger than normal and may

have

> something to do with my pain.Playing golf or other activities

raises

> the pain levels too! I have tried 2 nerve blocks (numbing

solution

> injected into spinal area) to try and block the pain,with no

success.

> I have been taking pain meds (Lortab) for 8 years 4 times a day.

> Without it I would not be able to function.

> My job requires me to work shift work..3 weeks days--3 weeks

> nights.This is very hard on my system especially my kidneys.

> This pain is Igan related but any other pain that you spoke of

> should not be. I cannot complain though because I am still NOT

on

> dialysis.I would have the other pain you have checked out.

> I hope this helps.

>

>

>

> ----------

>

> Outgoing mail is certified Virus Free.

> Checked by AVG Anti-Virus (http://www.grisoft.com).

> Version: 7.0.209 / Virus Database: 261.5.4 - Release Date:

26/12/2003

>

>

>

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