Re: Biopsy results leaves us puzzled

[Guest guest]

Hi Phil,

I agree with Cy, celebrating is in order! The preliminary test results

would have shown IgA deposits, and the lack thereof would indicate your son

does

not have IgAN.

That is great news indeed!

In a message dated 4/8/2005 1:26:06 P.M. Pacific Daylight Time,

phil_m_palmer@... writes:

We got back the preliminary results this afternoon. The doctor said

there is no evidence of IgA, she said it looks like a normal, healthy

kidney. She added that they are still completing tests for other

diseases but the only other disease that fits his symptoms is

Alport's. But Alport's has been pretty much ruled out by family

history. If all the tests comeback normal they plan to refer us to

urology.

What do you guys make out of this? Can they completly rule-out IgA

this quickly? I thought they need a whole battery of tests to

determine IgA?

My wife and don't know if we should be happy or not? Should we trust

that he does not have IgA?

Phil

[Guest guest]

So if Cy is correct that deposit are not consistently distributed

throughout then why would two nephrologists say that they are evenly

distributed? I am not iferring that anyone is wrong, I am just a

little stunned that two nephs would say something so incorrect.

How would you guys approach this with our neph?

Where on the Net can I find " official " medical reports to back me when

I approach my neph?

Phil

> Phil,

> First off congrats on the early results. Cy already gave a good

explanation of how the biopsy is read. I do hope the final results

give you some answers. I also hope, like my son, yours is having some

sort of acute problem that will clear. My guy is 7 now and so far,

knock on wood, all his labs have been normal. He never had a biopsy

though....we just keep a close eye on him yearly.

> As for the biopsy being representative of the entire

kidney....I'm glad they aren't. My biopsy has me listed as a class 5,

in a nut shell if you go by my biopsy alone I should be on dialysis

right now. So I do feel that a combination of biopsy results and labs

need to be used to make an accurate diagnosis. I wouldn't cut down

the fact that the early results show good news though.

>

> Keep on hanging in there and let's hope it's something simple.

>

> Amy G.

> Biopsy results leaves us puzzled

>

>

>

> We got back the preliminary results this afternoon. The doctor said

> there is no evidence of IgA, she said it looks like a normal, healthy

> kidney. She added that they are still completing tests for other

> diseases but the only other disease that fits his symptoms is

> Alport's. But Alport's has been pretty much ruled out by family

> history. If all the tests comeback normal they plan to refer us to

> urology.

>

> What do you guys make out of this? Can they completly rule-out IgA

> this quickly? I thought they need a whole battery of tests to

> determine IgA?

>

> My wife and don't know if we should be happy or not? Should we trust

> that he does not have IgA?

>

> Phil

>

>

>

>

>

> 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:

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>

> Thank you

>

>

>

>

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

>

[Guest guest]

The doctor used the " puzzling " to describe our scenerio. Doesn't that

make you feel good? (sarcasim) I am glad that everyone on this board

is consistant, paitaints know more than their doctors because they

deal with their disease 24/7. The neph said they were still completing

tests but that the only other disease which matched his symptoms was

Alports. It could be MCD, this would be a bit better prognosis than

IgA and more consistant with a 3 year old.

The one neph has 25 years experience with many paitients having IgA.

The second neph is a fellow but under the expereinced neph's wing. I

do know that each case is discussed with the entire neph team at

Hopkins so this is were I find it hard that ALL of the doctors would

misdiagnose IgA.

Thanks Pierre.

Phil

> Phil,

>

> There are no absolutes in this nephrology world, but yes, IgAN usually

> affects all of the parts of the kidney that have glomeruli in them.

Not all

> of the glomeruli would be sclerosed (scarred), but most would show some

> clinically-significant deposition of IgA immune complexes. For it to be

> IgAN, the IgA complexes (or proteins) have to be the predominant

ones (there

> are others, like IgG, IgM).

>

> When they take a sample with the biopsy gun, it doesn't just take one

> glomerulus. It takes a whole bunch of them, plus, in addition to

that, they

> usually take a number of samples. So, if they couldn't diagnose IgAN

from

> that, then it's probably not IgAN.

>

> Has any doctor mentioned the possibility of minimal change disease?

That can

> sometimes be hard to diagnose initially.

>

> Pierre

>

> Re: Biopsy results leaves us puzzled

>

>

> >

> >

> > Cy,

> >

> > I agree with your remarks except for the part about the biopsy not

> > representing the entire kidney. We asked the doctor(s) that exact

> > question more than one time. Both doctors answered the same that the

> > deposits are distributated evenly throughout both kidneys and one

> > sample would be enough to make the diagnoses. I am not trusting

> > because of two previous medical experiences where the initial

> > diagnoses of a family member was normal only to find out that it was

> > not, a month later.

> >

> > Phil

> >

> >

[Guest guest]

Hi Phil,

Everything I have read indicates that the deposits are generally evenly

distributed. However, when was biopsied, one of the provisos our

neph gave us was that the sample " might not be representative " . Given that

human beings are not machines, that certainly seemed reasonable. There are

several people here who speak of their biopsy sample being worse than their

labs indicate.

I certainly don't want to quibble about what your neph said. No doubt he is

correct in your case. None of us here are doctors and none have seen your

child.

The period between the light microscopy results and the balance of the

results was the single most insanity producing time I went through. I think

I checked my email 50 times a day and checked my voice mail nearly as

freqently! From the light microscopy results, I knew my kid had MPGN. In

essence, I was waiting to hear whether had MPGN 1, MPGN 2 or MPGN 3

(the difference being 5-7 years vs 10 years to end stage - which is a very

big deal in my book). As it turned out, the results remained inconclusive.

I hope you get this resolved FAST! Has your neph spoken about starting the

urological workup or is he waiting until the balance of the biopsy results?

Cy

Biopsy results leaves us puzzled

> >

> >

> >

> > We got back the preliminary results this afternoon. The doctor said

> > there is no evidence of IgA, she said it looks like a normal, healthy

> > kidney. She added that they are still completing tests for other

> > diseases but the only other disease that fits his symptoms is

> > Alport's. But Alport's has been pretty much ruled out by family

> > history. If all the tests comeback normal they plan to refer us to

> > urology.

> >

> > What do you guys make out of this? Can they completly rule-out IgA

> > this quickly? I thought they need a whole battery of tests to

> > determine IgA?

> >

> > My wife and don't know if we should be happy or not? Should we trust

> > that he does not have IgA?

> >

> > Phil

> >

> >

> >

> >

> >

> > 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]

No problem, Phil. That's why we call it a support group. I perfectly

understand your worries, and, anytime a question is asked, it helps other

people when there's discussion about it.

I think Cy has already provided an excellent reply in another post. I'll

just repeat that it's not an exact science. There's much overlap in

" features " between kidney diseases, and for some, the differences are pretty

subtle. FSGS (focal segmental glomerulosclerosis) can be a primary

diagnosis, but it can also be simply a description of the glomerulosclerosis

there is (which is the scarring) with the primary kidney disease being

something else, even IgAN. Have a look at the Glossary section on

www.igan.ca . I've provided an explanation of the terms " focal " and

" segmental " there.

Misdiagnoses are always possible. The one feature that characterizes IgAN is

not only that there are IgA deposits in the glomeruli (many people have

those who don't have IgAN), but that the IgA deposits are clearly the

predominant ones. Sometimes, there's a fine line between being predominant

or not, and the renal pathologist has to interpret these things. For

example, a given biopsy sample might be determined not to show IgAN because

the IgA immune complexes are not predominant, but that doesn't mean there

were no IgA deposits. Maybe there just weren't enough there to make a

diagnosis in that particular sample. It's not like IgA immune complexes

selectively choose only certain glomeruli to become trapped in. They tend to

be everywhere in the part of the kidney where the nephrons are (each nephron

has one glomerulus). But, all this is why in some cases, a diagnosis might

not be made from a first biopsy, and be made with a second one.

Pierre

Re: Biopsy results leaves us puzzled

> >

> >

> > >

> > >

> > > Cy,

> > >

> > > I agree with your remarks except for the part about the biopsy not

> > > representing the entire kidney. We asked the doctor(s) that exact

> > > question more than one time. Both doctors answered the same that the

> > > deposits are distributated evenly throughout both kidneys and one

> > > sample would be enough to make the diagnoses. I am not trusting

> > > because of two previous medical experiences where the initial

> > > diagnoses of a family member was normal only to find out that it was

> > > not, a month later.

> > >

> > > Phil

> > >

> > >

>

>

>

>

>

>

> 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]

Thanks Cy. for understanding. This stuff is confusing.

> > > Phil,

> > >

> > > There are no absolutes in this nephrology world, but yes, IgAN

usually

> > > affects all of the parts of the kidney that have glomeruli in them.

> > Not all

> > > of the glomeruli would be sclerosed (scarred), but most would

show some

> > > clinically-significant deposition of IgA immune complexes. For

it to be

> > > IgAN, the IgA complexes (or proteins) have to be the predominant

> > ones (there

> > > are others, like IgG, IgM).

> > >

> > > When they take a sample with the biopsy gun, it doesn't just

take one

> > > glomerulus. It takes a whole bunch of them, plus, in addition to

> > that, they

> > > usually take a number of samples. So, if they couldn't diagnose IgAN

> > from

> > > that, then it's probably not IgAN.

> > >

> > > Has any doctor mentioned the possibility of minimal change disease?

> > That can

> > > sometimes be hard to diagnose initially.

> > >

> > > Pierre

> > >

> > > Re: Biopsy results leaves us puzzled

> > >

> > >

> > > >

> > > >

> > > > Cy,

> > > >

> > > > I agree with your remarks except for the part about the biopsy not

> > > > representing the entire kidney. We asked the doctor(s) that exact

> > > > question more than one time. Both doctors answered the same

that the

> > > > deposits are distributated evenly throughout both kidneys and one

> > > > sample would be enough to make the diagnoses. I am not trusting

> > > > because of two previous medical experiences where the initial

> > > > diagnoses of a family member was normal only to find out that

it was

> > > > not, a month later.

> > > >

> > > > Phil

> > > >

> > > >

> >

> >

> >

> >

> >

> >

> > 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]

Phil,

I need to clarify. My son was diagnosed at 13 with a biopsy about 9 mo.

after first symptoms of gross hematuria. He got a transplant at 21 and

about 1 1/2 years later had a bad case of bronchitis and his serum

creatinine jumped up. He had a biopsy to see if it was a rejection

episode, medication toxicity or ?? From the results of that biopsy, it

looked like the type of inflammation associated with toxicity from

ProGraf, one of his immunosuppressants, and everyone was very pleased

that there was no evidence of IgA deposits suggesting no recurrence of

IgAN. But then a day or two later he went into nephrotic syndrome and

ascites (fluid overload) and was in the hospital for 9 days. After lots

of other testing turned up no other explanation for his symptoms, his

nephrologist decided to repeat the biopsy, and it was clear on the 2nd

one that there were IgA deposits and that at least part of what was

going on was a recurrence, due probably to the build-up of ProGraf in

his kidney which kept it from suppressing the IgA. Before the 2nd

(really the 3rd overall) biopsy, there was considerable speculation

that he might have another, even more rare, kidney disease, but that

seemed so unlikely to me. I figured you have to go with the simplest

explanation until proven otherwise, and so it made sense to biopsy

again. He was on high dose prednisone and Cytoxan for 6 months, and

everything calmed down. He did end up with some permanent damage to the

new kidney from the recurrence and the nephrotic syndrome but really

considerably less than predicted, and he's doing well now 2 years

later.

Betsy

>

> Betsy,

>

> Thanks for the your story. Sorry to hear your son has IgAN. How old

> was he when he was biopsied? What made you immediatly have another

> biopsy? How much time past from the first date of symptoms to the

> first biopsy? I ask because I wonder how long deposit take to the

> first sign of hematuria/protenuria? My son has had about 5 seperate

> episodes of gross hematuria, some with protein as high as 1+ and

> several with no protein. He has never had a dip stick with only

> protein, not sure if this means anything or not.

>

> Phil

[Guest guest]

Phil,

Missing IgAN on a biopsy would be pretty unusual. About the only way would

be a combination of two distinict events; one, very little scarring and two

the technician preparing your biopsy slides screwing up the staining. IgA

antibody deposition is very distinctive morphologically, and the stains they

use to test for IgA (they make several sets of slides and test for several

types of deposition, by the way) are very specific to IgA.

It is possible, through accident as I describe above or very mild disease

that it wasn't caught. However, I remember the nephs making several sets of

" pokes, " to get representative kidney samples...far more than just one

sample was taken.

Also, IgAN never occurs in one kidney only, so it is not possible that (I

presume) your son has one highly IgA riddled kidney and one completely

healthy one.

Your docs are the experts on your son, so, while difficult, at some stage

you will have to trust in them. Far easier to trust when its my health at

stake as opposed to my own son, so like others here I feel your pain.

best wishes,

Bart

Biopsy results leaves us puzzled

We got back the preliminary results this afternoon. The doctor said

there is no evidence of IgA, she said it looks like a normal, healthy

kidney. She added that they are still completing tests for other

diseases but the only other disease that fits his symptoms is

Alport's. But Alport's has been pretty much ruled out by family

history. If all the tests comeback normal they plan to refer us to

urology.

What do you guys make out of this? Can they completly rule-out IgA

this quickly? I thought they need a whole battery of tests to

determine IgA?

My wife and don't know if we should be happy or not? Should we trust

that he does not have IgA?

Phil

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]

That is quite a history. I am glad that your son's new kidney has

settled down and he is doing fine. I wish many more years of health to

him.

Phil

>

> >

> > Betsy,

> >

> > Thanks for the your story. Sorry to hear your son has IgAN. How old

> > was he when he was biopsied? What made you immediatly have another

> > biopsy? How much time past from the first date of symptoms to the

> > first biopsy? I ask because I wonder how long deposit take to the

> > first sign of hematuria/protenuria? My son has had about 5 seperate

> > episodes of gross hematuria, some with protein as high as 1+ and

> > several with no protein. He has never had a dip stick with only

> > protein, not sure if this means anything or not.

> >

> > Phil

>

>

>

[Guest guest]

Phil,

Me too!! It's my kidney and I know it's very happy there, so I told

the doctors that I was sure if they got things calmed down, the kidney

would go back to working fine for him. And it has.

Betsy

>

> That is quite a history. I am glad that your son's new kidney has

> settled down and he is doing fine. I wish many more years of health to

> him.

>

> Phil

>

>

>

> >

> > >

> > >  Betsy,

> > >

> > >  Thanks for the your story. Sorry to hear your son has IgAN. How

> old

> > >  was he when he was biopsied? What made you immediatly have

> another

> > >  biopsy? How much time past from the first date of symptoms to the

> > >  first biopsy? I ask because I wonder how long deposit take to the

> > >  first sign of hematuria/protenuria? My son has had about 5

> seperate

> > >  episodes of gross hematuria, some with protein as high as 1+ and

> > >  several with no protein. He has never had a dip stick with only

> > >  protein, not sure if this means anything or not.

> > >

> > >  Phil

> >

> >

> >