New Member

[Guest guest]

I don't think it's really part of the IgAN, but it can be related to chronic

renal failure if it's very advanced, or to blood pressure pills, or maybe

totally unrelated mood disorder. It doesn't really matter, as the treatment

of mood disorders would all be the same anyway.

Pierre

Re: new member

> ,

>

> I feel great, I am not tired, no water retention or any other symptoms

with

> the IGa. I am however very moody, almost to the point my family is ready

to

> lock me out of the house.

>

> I don't sleep at all unless I take a sleeping pill. If you wake me up

even

> an hour or as long as five hours later I can't go back to sleep without

> another sleeping pill. Even when I feel really tired I just lay there

wide

> awake?

>

> Is this all part of IGa or do I have a seperate mood/mind condition that

is

> going to eat my brain before I need a kidney.

>

> CC

>

[Guest guest]

Hi CC

I maybe wrong here, but your symptoms could well be depression? Has

this ever been suggested to you before? Stress can also bring about

mood problems and sleep problems? Am I on the right track CC or way off

base? I hope you can soon get some help for this, coping with these

things along with IGAN can be a real struggle, but we are all here to

help each other, so you know you only have to shout.

Best wishes

Re: new member

,

I feel great, I am not tired, no water retention or any other symptoms

with

the IGa. I am however very moody, almost to the point my family is

ready to

lock me out of the house.

I don't sleep at all unless I take a sleeping pill. If you wake me up

even

an hour or as long as five hours later I can't go back to sleep without

another sleeping pill. Even when I feel really tired I just lay there

wide

awake?

Is this all part of IGa or do I have a seperate mood/mind condition that

is

going to eat my brain before I need a kidney.

CC

Re: new member

> Hi CC,

>

> Each of us is so different in how our body tolerates rising serum

creatinine.

> was about to go a very long time, and others have to go much

sooner.

>

> I know Pierre has said in the past that there seems to be a point at

which

> reaching ESRD becomes inevitable, but I can't remember what the serum

> creatinine level is. Pierre, sound familiar? Do you remember what

that

> " magic " level is?

>

> Sorry to hear though that your creatinine is rising so quickly. I

hope

you

> are able to stabilize and maintain where we are. I think you and

Connie

and

> I are all about the same place, so I say the three of us resist and

hold

> steady as long as we can.

>

> But, as Connie said in an earlier message, we are here to support each

other

> all along the way.

>

>

>

>

>

[Guest guest]

Welcome to the group Judy.

When you're a kidney patient, depending on where you are in terms of overall

kidney function, you can have symptoms for the specific disease, in this

case, IgAN, and just the general symptoms from chronic renal failure. That's

why www.igan.ca is organized as it is, with an IgAN section, and a Renal

Failure section.

However, I can't say I've ever heard of the " sticking pins in them " feeling.

The mucus build-up in the throat I've had, but I also have asthma and

allergic rhinitis, so it has always been attributed to that. Since you

already have respiratory problems, there's a good chance it's pulmonary

rather than renal. What does your doctor think about it?

Pierre

New member

> Hi, my name is Judy and I was diagnosed with IGAN a couple of months

> ago. I was wondering if anyone has some of the same symptoms as I do

> or if maybe they are related to something else. Sometimes when I take

> in a breath, especially a deep one, it feels like someone is grapping

> my kidneys and sticking pins in them. It takes my breath away and the

> pain moves up slightly towards my lungs. When this first started

> happening it was very sporatic and would last for a split second, but

> now it occurs more frequently and doesn't go away right away. I

> experience the swelling that is common and the achy flank pain a lot.

> I also frequently get colds, sinusisits, bronchitis and those things.

> I constantly feel like I have mucus build up in my throat...does that

> happen to anyone else? I don't smoke so it can't be attributed to

> that. Thanks in advance for any advice you can give me and I look

> forward to talking to everyone.

> Thanks

> Judy

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

> Visit our companion website at www.igan.ca

>

>

[Guest guest]

Hi Judy

A very warm welcome to the group, although I am sorry that you have been

diagnosed with IGAN to be here. Like you I am very susceptible to

URTI's, and have just recently got over a nasty bout of pleurisy. The

pain you describe I have had, but only when I have a respiratory

infection. The colds, sinus and bronchial infections can be a real

problem, and my doctors insist that I am put on antibiotics for each

episode. A chest x-ray might be a good idea just to check you out

completely. Hope you soon get better.

Best wishes

New member

Hi, my name is Judy and I was diagnosed with IGAN a couple of months

ago. I was wondering if anyone has some of the same symptoms as I do

or if maybe they are related to something else. Sometimes when I take

in a breath, especially a deep one, it feels like someone is grapping

my kidneys and sticking pins in them. It takes my breath away and the

pain moves up slightly towards my lungs. When this first started

happening it was very sporatic and would last for a split second, but

now it occurs more frequently and doesn't go away right away. I

experience the swelling that is common and the achy flank pain a lot.

I also frequently get colds, sinusisits, bronchitis and those things.

I constantly feel like I have mucus build up in my throat...does that

happen to anyone else? I don't smoke so it can't be attributed to

that. Thanks in advance for any advice you can give me and I look

forward to talking to everyone.

Thanks

Judy

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

Visit our companion website at www.igan.ca

[Guest guest]

I recognise a lot of what you say and I would describe short sharp stabbing

pains in my kidneys too. I haven't had it much recently but now and then

it'll flare up for a few minutes and its difficult to ignore.

Sally.

Re: New member

Welcome to the group Judy.

When you're a kidney patient, depending on where you are in terms of

overall

kidney function, you can have symptoms for the specific disease, in this

case, IgAN, and just the general symptoms from chronic renal failure.

That's

why www.igan.ca is organized as it is, with an IgAN section, and a Renal

Failure section.

However, I can't say I've ever heard of the " sticking pins in them "

feeling.

The mucus build-up in the throat I've had, but I also have asthma and

allergic rhinitis, so it has always been attributed to that. Since you

already have respiratory problems, there's a good chance it's pulmonary

rather than renal. What does your doctor think about it?

Pierre

New member

> Hi, my name is Judy and I was diagnosed with IGAN a couple of months

> ago. I was wondering if anyone has some of the same symptoms as I do

> or if maybe they are related to something else. Sometimes when I take

> in a breath, especially a deep one, it feels like someone is grapping

> my kidneys and sticking pins in them. It takes my breath away and the

> pain moves up slightly towards my lungs. When this first started

> happening it was very sporatic and would last for a split second, but

> now it occurs more frequently and doesn't go away right away. I

> experience the swelling that is common and the achy flank pain a lot.

> I also frequently get colds, sinusisits, bronchitis and those things.

> I constantly feel like I have mucus build up in my throat...does that

> happen to anyone else? I don't smoke so it can't be attributed to

> that. Thanks in advance for any advice you can give me and I look

> forward to talking to everyone.

> Thanks

> Judy

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

> Visit our companion website at www.igan.ca

>

>

[Guest guest]

Pierre,

This is my first message and I don't know quite where to start. I have been

reading messages for a few days and am impressed with the knowledge being

shared.

I have was diagnosed a year ago and am a female (shall we say in my late

thirties)

I have always been healthy and active untill about two years ago when I began

to feel tired. followed by episode of gross hematuria, biopsy, and a

diagnoses.

At first I had no protein but within the last six months it has gone from

trace to 30+ on a dip stick. blood in the urine is almost always visible.

My neph only says that statistically it is unlikely that it will progress.

He predicted that after the first episode that all hematuria would disappear

and would never happen again.

My question to you is if you could go back to the time of your diagnoses what

would you have liked to have done different? I don't won't to look back and

think if only I had done something different.

On a side note, I read some of the messages about the cost of neph. Well, I

have been taken for a ride. My last visit was 400 US dollars. just for a

five minute office visit. labs were seperate. and he is not even cute.

I look forward to hearing from you.

[Guest guest]

Hi ,

Yes I agree with Pierre, I recently had Bronchitis (which I've never

had) and I needed a nebuliser (for the 1st time in my entire life). My

GP instantly cut one of medications down to half as it apparently

escalates wheezing (I had no idea) which is why I needed the nebuliser

to ease the wheeze, so to speak.. Anyway, when I went to see my Neph for

a check up, and I told him about the change in meds he was quite

impressed with what my GP did. So go see your GP or research the meds on

the net.

Good luck.

Leonie (Sydney, Australia)

New Member

Hello: I have just joined your group. I have been recently dx with

IGA last March... I am on a blood pressure medicine (which I seem to

be increasing everytime I visit my neph/md) I was just wondering has

anyone experienced any type of wheezing symptoms.. I have never been

told I have asthma... I was just wondering if it could be related?

Also, my other question is: My protein level seems to keep

increasing which I know means the disease is increasing..

Does anybody have any good low protein diets ???

Thanks in advance for your help...

Hope to talk to you all soon..

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

Visit our companion website at www.igan.ca

[Guest guest]

Hi

Welcome to the group, nice to hear from you, I am sorry that you have

been diagnosed with IGAN to be here, but welcome nevertheless, I hope

you can find some comfort from the group. I hope your Neph is right,

and that you will remain somewhat stable over the coming times, always a

lottery on this one though, but your Neph will keep a close eye on your

labwork I am sure. Fatigue seems go hand in hand with many of us here

with IGAN, and to be honest is my biggest whine, it really does my head

in sometimes.

Chokes on one's tea! $400 for a five minute appointment is a bit steep,

and not even cute, I would be finding a cuter one that comes cheaper too

if it were me lol!!!! Seriously can you not query this price?

Welcome aboard again.

UK Moderator

Re: new member

Pierre,

This is my first message and I don't know quite where to start. I have

been

reading messages for a few days and am impressed with the knowledge

being

shared.

I have was diagnosed a year ago and am a female (shall we say in my late

thirties)

I have always been healthy and active untill about two years ago when I

began

to feel tired. followed by episode of gross hematuria, biopsy, and a

diagnoses.

At first I had no protein but within the last six months it has gone

from

trace to 30+ on a dip stick. blood in the urine is almost always

visible.

My neph only says that statistically it is unlikely that it will

progress.

He predicted that after the first episode that all hematuria would

disappear

and would never happen again.

My question to you is if you could go back to the time of your diagnoses

what

would you have liked to have done different? I don't won't to look back

and

think if only I had done something different.

On a side note, I read some of the messages about the cost of neph.

Well, I

have been taken for a ride. My last visit was 400 US dollars. just for

a

five minute office visit. labs were seperate. and he is not even cute.

I look forward to hearing from you.

[Guest guest]

Dear First message >upper thirties,

There are some things that some Doctors do to try to help with the disease, but

the most important advice from a Doc. that I have gotten is to not use any

anti-inflammatory meds. They are correct, don't do it!!!! They process through

the kidneys and will tear at an already sick organ. From what I have seen you

can try the different suggestions form your physician, but the don't do's are

the most important. There may be a cure for this one day, but not now. The

only meds that I have used are meds that are in reaction to what the kidneys are

doing to me. Higher cholesterol, higher BP, and fatigue. But, what I have said

does not mean that you ignore a suggested treatment of your Doc. I have tried

all treatments suggested because the doc. has said that it may (big may) help

slow down the progression of the disease. Be sure you go to your doctor

regularly and keep up with what is going on with your body.

AND LIVE ON. Do what you can and then live your life. We are only here for so

long and then we are gone no matter what is wrong with us. If you find

yourself focusing too much on your disease, make sure that you are not getting

depressed. If you are seek help. This chronic disease living can get to you.

Not only can the disease hurt your body, but living with it can hurt you mind.

You can do something about that. I will not let this disease do that to me. I

take a very mild antidepressant religiously. For me, it makes this disease

easier to deal with and makes me easier for my family and friends to live with

me!

Re: new member

Pierre,

This is my first message and I don't know quite where to start. I have been

reading messages for a few days and am impressed with the knowledge being

shared.

I have was diagnosed a year ago and am a female (shall we say in my late

thirties)

I have always been healthy and active untill about two years ago when I began

to feel tired. followed by episode of gross hematuria, biopsy, and a

diagnoses.

At first I had no protein but within the last six months it has gone from

trace to 30+ on a dip stick. blood in the urine is almost always visible.

My neph only says that statistically it is unlikely that it will progress.

He predicted that after the first episode that all hematuria would disappear

and would never happen again.

My question to you is if you could go back to the time of your diagnoses what

would you have liked to have done different? I don't won't to look back and

think if only I had done something different.

On a side note, I read some of the messages about the cost of neph. Well, I

have been taken for a ride. My last visit was 400 US dollars. just for a

five minute office visit. labs were seperate. and he is not even cute.

I look forward to hearing from you.

[Guest guest]

Medically, there isn't much I could have done different at the time I

started to have hematuria, and later proteinuria. If it were now though, I

would want to be on an ACE inhibitor early on (or an angiotensin II receptor

blocker if the ACE inhibitor caused problems). During the 1990's, after I

started having high blood pressure, if I could go back, I would be more

fanatical about avoiding high sodium foods. I realize now that I could have

controlled my blood pressure more during that time.

Administratively, so to speak, there certainly are thing I would do

differently if I could go back - things that involve making sure not to

endanger or eliminate existing future pensions, life insurance and

disability insurance.

When you say your hematuria is visible, do you mean it's actually visible to

the naked eye all the time? That would seem a little unusual. It's more

common to have microscopic hematuria all the time, punctuated by episodic

periods of visible blood in the urine.

Dipstick tests are very rough indicators. Have you had an actual urinalysis

of a 24 hour urine collection? Do you know what your serum creatinine is?

Pierre

Re: new member

> Pierre,

>

> This is my first message and I don't know quite where to start. I have

been

> reading messages for a few days and am impressed with the knowledge being

> shared.

>

> I have was diagnosed a year ago and am a female (shall we say in my late

> thirties)

> I have always been healthy and active untill about two years ago when I

began

> to feel tired. followed by episode of gross hematuria, biopsy, and a

> diagnoses.

>

> At first I had no protein but within the last six months it has gone from

> trace to 30+ on a dip stick. blood in the urine is almost always visible.

> My neph only says that statistically it is unlikely that it will progress.

> He predicted that after the first episode that all hematuria would

disappear

> and would never happen again.

>

> My question to you is if you could go back to the time of your diagnoses

what

> would you have liked to have done different? I don't won't to look back

and

> think if only I had done something different.

>

> On a side note, I read some of the messages about the cost of neph. Well,

I

> have been taken for a ride. My last visit was 400 US dollars. just for a

> five minute office visit. labs were seperate. and he is not even cute.

>

> I look forward to hearing from you.

>

>

[Guest guest]

thanks so much for your prompt response. It helps to now there is someone

there.

yes, the blood is almost always visible from pink to brick red. The neph

says that it does not indicate anything. I did quit jogging which seemed to

help. I have had one twenty four hour urine which showed less than half a

gram. crit is 1.2

I have always had really low blood pressure so I am really optomistic about

that. It only occasionally makes it up to normal. I am taking an ace

inhibitor.

Perhaps what I need is not a nephrologist but a fortune teller. That would

make things much easier. Untill then I will just have to wait. My next

appt.is in feb.

[Guest guest]

Absolutely!!

Re: new member

> With respect, I don't think the jury is still out on anti-

> inflammatory medication and IgA. There are nephrologists out there---

> leaders in the field---who believe that drugs like Prednisolone can

> delay or prevent the progression of IgA in a material number of

> patients. Does it work for everyone? No. But, it works for enough

> people that some nephs are strong believers. My neph showed me some

> recent Italian research (apologies, I can't point you to a reference,

> maybe someone else here knows) that showed a measurably slower

> progression of IgA in the group using corticosteriods than in the

> control.

>

> There is still so much about this disease that is unknown; we all

> need to keep an open mind.

>

>

>

> > Dear First message >upper thirties,

> >

> > There are some things that some Doctors do to try to help with the

> disease, but the most important advice from a Doc. that I have gotten

> is to not use any anti-inflammatory meds. They are correct, don't do

> it!!!! They process through the kidneys and will tear at an already

> sick organ. From what I have seen you can try the different

> suggestions form your physician, but the don't do's are the most

> important. There may be a cure for this one day, but not now. The

> only meds that I have used are meds that are in reaction to what the

> kidneys are doing to me. Higher cholesterol, higher BP, and

> fatigue. But, what I have said does not mean that you ignore a

> suggested treatment of your Doc. I have tried all treatments

> suggested because the doc. has said that it may (big may) help slow

> down the progression of the disease. Be sure you go to your doctor

> regularly and keep up with what is going on with your body.

> >

> > AND LIVE ON. Do what you can and then live your life. We are only

> here for so long and then we are gone no matter what is wrong with

> us. If you find yourself focusing too much on your disease, make

> sure that you are not getting depressed. If you are seek help. This

> chronic disease living can get to you. Not only can the disease hurt

> your body, but living with it can hurt you mind. You can do

> something about that. I will not let this disease do that to me. I

> take a very mild antidepressant religiously. For me, it makes this

> disease easier to deal with and makes me easier for my family and

> friends to live with me!

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

Visit our companion website at www.igan.ca

[Guest guest]

Hi Elsie,

A very warm welcome to our group. I am so glad you found us.

Congratulations on your 70th birthday coming up! With your serum creatinine

looking pretty stable, you could be correct at 2022, especially with your

slight improvement Feb 2002. I am glad to hear that you were able to get

most all your questions answered on the web site. Pierre has done a

wonderful job and many of us have been most blessed by his efforts.

There are a few members in Southern California including Mia, and Marty. My

daughter also goes to college at USC in Los Angeles. I think it is a bit

warmer down in Southern California than it is in Canada :-)

Welcome again,

[Guest guest]

Pierre,

My Nephrologist told me not to jog for the very same reason. Does that mean

that if we jog and more blood and protein are present we are doing more

damage to ourselves? Just curious.

(Oklahoma)

Re: new member

Avoiding ground pounding activities like jogging may actually help in

reducing both blood and protein in the urine. Walking is a great exercise. I

like cycling myself.

Pierre

Re: new member

> thanks so much for your prompt response. It helps to now there is someone

> there.

>

> yes, the blood is almost always visible from pink to brick red. The neph

> says that it does not indicate anything. I did quit jogging which seemed

to

> help. I have had one twenty four hour urine which showed less than half a

> gram. crit is 1.2

>

> I have always had really low blood pressure so I am really optomistic

about

> that. It only occasionally makes it up to normal. I am taking an ace

> inhibitor.

>

> Perhaps what I need is not a nephrologist but a fortune teller. That

would

> make things much easier. Untill then I will just have to wait. My next

> appt.is in feb.

>

>

>

>

[Guest guest]

Hi .

I don't know if there's ever been a formal study on it. I think it's just an

assumption based on clinical experience. Blood doesn't matter that much, but

anytime you can reduce the amount of protein in the urine, it does lessen

the risk a bit. Proteinuria is itself a risk factor. One of my earlier

nephrologists frequently recommended a stationary exercycle.

Pierre

Re: new member

>

>

> Avoiding ground pounding activities like jogging may actually help in

> reducing both blood and protein in the urine. Walking is a great exercise.

I

> like cycling myself.

> Pierre

>

[Guest guest]

Thanks. You just affirmed what I had thought to be true.

Thank you!

(Oklahoma)

Re: new member

Hi .

I don't know if there's ever been a formal study on it. I think it's just an

assumption based on clinical experience. Blood doesn't matter that much, but

anytime you can reduce the amount of protein in the urine, it does lessen

the risk a bit. Proteinuria is itself a risk factor. One of my earlier

nephrologists frequently recommended a stationary exercycle.

Pierre

Re: new member

>

>

> Avoiding ground pounding activities like jogging may actually help in

> reducing both blood and protein in the urine. Walking is a great exercise.

I

> like cycling myself.

> Pierre

>

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

<http://groups.yahoo.com/group/iga-nephropathy/>

Visit our companion website at www.igan.ca

[Guest guest]

I have never caught anyone in the chat room either, if you give me date and

time I can chat most anyday between 10:00am and 6:00pm Mountain Standard

Time. I am in Idaho.

Posting here normally gets a response within a couple of hours. Pierre

seems to be here all the time. He is very helpful.

CC

new member

> Hi,

> I am really looking to talk to anybody else with this disease. I

> live in Washington State, anyone near me? Does anyone go to the chat

> room? I can never find anyone there? Please help me!

> thanks!

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

> Visit our companion website at www.igan.ca

>

>

[Guest guest]

--How about tomorrow at 10am your time....walkin_woman- In iga-

nephropathy , " Maddens Repair " <ltrmr@o...> wrote:

> I have never caught anyone in the chat room either, if you give me

date and

> time I can chat most anyday between 10:00am and 6:00pm Mountain

Standard

> Time. I am in Idaho.

>

> Posting here normally gets a response within a couple of hours.

Pierre

> seems to be here all the time. He is very helpful.

>

> CC

> new member

>

>

> > Hi,

> > I am really looking to talk to anybody else with this disease. I

> > live in Washington State, anyone near me? Does anyone go to the

chat

> > room? I can never find anyone there? Please help me!

> > thanks!

> >

> >

> >

> > To edit your settings for the group, go to our Yahoo Group

> > home page:

> > http://groups.yahoo.com/group/iga-nephropathy/

> > Visit our companion website at www.igan.ca

> >

> >

[Guest guest]

10:00am Friday, see you there. I hope some others will join us.

CC

new member

> >

> >

> > > Hi,

> > > I am really looking to talk to anybody else with this disease. I

> > > live in Washington State, anyone near me? Does anyone go to the

> chat

> > > room? I can never find anyone there? Please help me!

> > > thanks!

> > >

> > >

> > >

> > > To edit your settings for the group, go to our Yahoo Group

> > > home page:

> > > http://groups.yahoo.com/group/iga-nephropathy/

> > > Visit our companion website at www.igan.ca

> > >

> > >

[Guest guest]

Thanks ,

I live by New Bern right next to the coast. We got 6 inches of snow.

My stats are really good as of my last visit. My big problem is that

I keep getting the signs of a UTI but they all come back negative.

Thats what my prblem is now. My GP has not returned any of my calls

yet. My Neph says that sometimes happens. He has tried for 2 years

to get me on the research at Duke and Chapel Hill with no luck. I'm

too healthy for them. My BP is low, Chol- changes monthy, I'm on B6

for the edema. It helps alot without it my arms and legs are numb

all the time.

Thanks again for the great welcome,

Marie

[Guest guest]

Welcome to the group Marie.

Hope your snow melts soon.

Pierre

new Member

> Hi everyone,

>

> I just wanted to introduce myself. My name is Marie and I live in

> NC at the moment. My Husband is a Marine.

>

> I was diagnosed with IGA- N about 2 years ago after having a doctor

> misdiagnose the blood in my urine.

>

> I'm doing really good most of the time. Right now, I'm having problems

> and can't see my doctor

>

> Because we got snow. That doesn't happen often.

>

> I'm also the mom of an almost 9 year old boy and 7 year old boy.

>

>

>

> Thank you,

>

> Marie

>

>

[Guest guest]

:

Welcome to the group. I hope that you receive good results on

Tuesday morning, so that you can be set at ease regarding the

progression of this disease.

The symptoms that you describe that caused your mother to take you

to the doctor seem very similar to mine -- I also was experiencing

blinding headaches from the high BP, and was diagnosed within a

couple of weeks after first seeing the doctor.

It's probably very difficult to handle this at this point in your

life, given the little one that you are now responsible for.

The only thing I can tell you is that now, just a little over two

years into this disease, I'm once again reasonably healthy, and able

to do some of the things that I really like to do. On the other

hand, I do have to plan out strenous exercise around the medicines

that I take, and that I do feel more tired in the morning, but other

than those small things, I feel like I have better overall health

than any time in the last couple of years.

We hope that this group can provide you with some good advice as you

start down this path...

Walt

P.S. I worked with a company that had staff in London, Ontario for

a couple of years -- are you from eastern, western, or northern

Ontario?

[Guest guest]

Hi , I am glad you found this support group, it is wonderful. A

lot does go on so you will need to file things for when the time comes

that you may find some topics more relevant to your circumstances. Any

emails you post, you will get a response to.

I am 30 and was diagnosed in September 2002 as a result of killer

migraines which I had never had before. After prescribing migraine

treatment he finally discovered the high BP (240/180). My proper Dr was

not available until visit 3 in one week which is why it took a while. He

flipped, I could see the fear in his eyes (just as I was vomiting into a

bowl they gave me in the Dr's). He thought I was going to have a stroke.

He sent me home with strict supervision and a letter for the hospital if

nothing improved within hours. Eventually he had me on BP tablets then

nothing, just told me to lose some weight and it would get better. FOOL.

Finally I had some blood tests done for some other surgery and BANG, my

life was never to be the same again.

Anyway, it's not so bad, don't panic. You can still raise your children

and lead a happy life. Depending on your stage (and everyone is

completely different) you may not experience any further life altering

events. I hope this happens for you and the rest of us, but I personally

wouldn't bet on it. Eventually, I will reach failure and require

Dialysis, which doesn't seem so bad, life altering again and a bloomin

inconvenience but still survival.

Good luck,

Leonie (Sydney, Australia)

new member

Hi I'm a new member.

My name is and I live in Ontario. I was diagnosed with Iga

type 2 in November. I've been very ill since being pregnant with my

21 month old son. The doctors originally thought it was eclampsia

and that it would go away shortly after his birth. My blood pressure

did slowly get better (with mild medication) but I kept up with large

blood and high protein in my urine for a year. No one seemed alarmed

at that and I was told time and again that some people present with

that but are free of disease. Then in July of 2002 my blood pressure

started to creep up again. My GP caught at a routine physical and

said to come back after our month long vacation at our cottage to

have it re checked. By that time I was extremely fatiqued, nauseous,

my mother who is a nurse was alarmed checked my blood pressure found

it to be 190/120. I went into my GP he gave me fast acting drugs to

bring down my blood pressure and a mild maintenance drug and refered

me to an internal medicine specializing in women's health. By the

time that appointment came up I was having blinding headaches nauseau

and extreme fatique. My blood pressure had changed to 165/138 again

unfortunately it took him almost two months for kidney disease to

occur to him. It would have taken probably longer but one day I was

so ill my mother just packed me into the car and rushed me to emerg.

The dr's there quickly determined a 35 year old female who prior to

this pregnacy rode her bike every day, excercised, had two older

children should not have blood pressure like that ordered a battery

of tests and had me in to see a nephrologist the next day.

She has been wonderful gave me some serious drugs to reduce the

blood pressure they work i feel much better, started me on fish oil,

HCT, iron, did a biopsy. She has also ordered a 48 hr harness, ECCO

and a CAT of my brain because of other symptons I presented with and

because of the excessively high and prolonged blood pressure

problems. I have already had these tests and get the results on

Tuesday.

Sorry about the length of this introduction but I almost needed to

see it written out for me too. Due to the three children I only get

online every few days but I would love to hear from any who have time.

[Guest guest]

>> When you speak of sighns of a UTI do you mean visible

> blood in your urine? >

>

>

I have the blood, but most of all is bad pain and pressure. Here are

my stats from Aug and Sept. 2002 that was my last testing.

Creat- 0.7

Chol- 223

protien - 1+

Blood -3+

The interpretion of my 2000 biopsy is: IgA Nephropathy with mild

mesangioproliferative glomuerlonephritis.

I know that this all started when I got Strep throat in 1999. I had

so much blood in my urine the lab said the could not test it the ER

doctor had the nurse due a cath on me that was even darker. They

then decided to due a pap smear thinking I was on my period and not

telling them the truth. I was so sick at the time I was barely awake.

I was throwing up all the time and could hardly get out of bed. They

sent me home saying it was strep and a virus. 3 days later I was

back even worse. of course the same doctor was there and got mad at

me for being there. he told me again it was only Strep and Virus.

Being this sick went on for 2 weeks finially I was able to get to my

regular doctor. She knew right away something was wrong with my

kidneys. She thought it was just Glomuerlonephritis. Got better and

when I got Strep again. It was the same thing over again, However I

do not go to the ER any more. That time I ended up in the hospital

for 2 days. They finally sent me to a Neph.- the rest is at the is

the at the top of my story.

Sorry so long,

Marie

[Guest guest]

Dear

A warm welcome to the group, although of course I am very sorry that you

have been diagnosed with IGAN to be here. Your symptoms are well known

to many of us here in the lead up to this diagnosis, and it is not too

unsurprising (though no ideal), that it did take a while for you to get

this diagnosis. The trouble is the symptoms of this condition can mimic

others problems, as you found out, pre-emclampsia in your initial

stages. The fatigue is a real bind, I know only too well, and the

advice I would give, and this will be hard for you with three children,

is to rest up whenever you get a chance. Exercise is still important of

course, but limit it to what you feel comfortable with. I am pleased

that you are finally under a Neph who sounds as though she has done a

thorough job for you, but if you have any further questions, need a

place to offload, you know where we are.

Welcome once again.

Best wishes

UK Moderator

new member

Hi I'm a new member.

My name is and I live in Ontario. I was diagnosed with Iga

type 2 in November. I've been very ill since being pregnant with my

21 month old son. The doctors originally thought it was eclampsia

and that it would go away shortly after his birth. My blood pressure

did slowly get better (with mild medication) but I kept up with large

blood and high protein in my urine for a year. No one seemed alarmed

at that and I was told time and again that some people present with

that but are free of disease. Then in July of 2002 my blood pressure

started to creep up again. My GP caught at a routine physical and

said to come back after our month long vacation at our cottage to

have it re checked. By that time I was extremely fatiqued, nauseous,

my mother who is a nurse was alarmed checked my blood pressure found

it to be 190/120. I went into my GP he gave me fast acting drugs to

bring down my blood pressure and a mild maintenance drug and refered

me to an internal medicine specializing in women's health. By the

time that appointment came up I was having blinding headaches nauseau

and extreme fatique. My blood pressure had changed to 165/138 again

unfortunately it took him almost two months for kidney disease to

occur to him. It would have taken probably longer but one day I was

so ill my mother just packed me into the car and rushed me to emerg.

The dr's there quickly determined a 35 year old female who prior to

this pregnacy rode her bike every day, excercised, had two older

children should not have blood pressure like that ordered a battery

of tests and had me in to see a nephrologist the next day.

She has been wonderful gave me some serious drugs to reduce the

blood pressure they work i feel much better, started me on fish oil,

HCT, iron, did a biopsy. She has also ordered a 48 hr harness, ECCO

and a CAT of my brain because of other symptons I presented with and

because of the excessively high and prolonged blood pressure

problems. I have already had these tests and get the results on

Tuesday.

Sorry about the length of this introduction but I almost needed to

see it written out for me too. Due to the three children I only get

online every few days but I would love to hear from any who have time.