Re:

[Guest guest]

Welcome Leah. Hope your find our group useful.

Hi I'm new to this message group.

[Guest guest]

Hello.....I'm new to thi group. I am a 29 year old male with IgA

Nephropathy for the last 10 years. Until recently, when a patient of mine

(i'm a dentist) told of of his IgAN, I thought I was alone. However, after

finding this group and reading some e-mails, it looks fairly common. THANK

YOU. I'm not so scared of the disease and possible ESRF....if it happens,

it happens....what can you do? You have to live life the fullest. I do

have some questions, that my nephrologist does not like to answer (I know

that no one else is a professional.....i just would like some input, PLEASE)

1) Is proteinurea seen as foam in the urine???

2) My blood pressure is well controlled (120/80) and am taking 30mg of

Monopril (ACE Inhibitor) as well as 3 g of salmon daily. However, my

protein loss is 2.20g / day and my creatine is 115 micrmol/L My cholesterol

level is high at 4.96 (LDL is 3.38). Can anyone guide me to my long term

prognosis?

3)where is the address for the IGAN chat line?

hope to hear from someone soon.

_________________________________________________________________

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[Guest guest]

Dear

Welcome to our group, I hope you find it useful. Reading through your

mails, I will try to address your questions as well as I can, but before

that, I can assure you are definitely not alone with your IGAN, this

group is testament to that. Being scared of any illness is totally

normal, and this one being the relatively silent nature is very

baffling. I was diagnosed just over 2 years ago, but our Moderator

Pierre is the voice of experience with this disease, having had it for

some 25 years, so I am sure he will add his comments too.

1. As far as I am aware, proteinura is not seen by

foamy urine, but only by proper testing. Most of us in here have or

have had proteinura, and I do have foamy urine, but I don't believe this

is how they find this out. I have only had protein show 3 x in my

diagnosis, and only ever when I have had a virus. I do have gross

hematuria, and sometimes it seems you have one or the other.

2. As far as your BP is concerned, that seems ok, although I

would have said slightly elevated, mine has been very high in the past,

but again only when I have had a virus, if anything it normally tends to

run on the low side 90/65. Your cholesterol level is high, and I am

assuming this is being addressed. You are probably aware that BP and

Cholesterol need to be carefully monitored in the management of this

condition. As to your medications I do not take any at present, so I

will leave that to those who take them to comment, if comment is needed.

2. The chat room is in the list of activities on the

home page of this group i.e. messages, chat etc. It is very easy to

use, and Pierre and I have tried it, us being the only two so far. If

you want to meet up so to speak let me know and I will come and chat

with you.

4. Some of us me included, seem to suffer more than others with

colds/flu. I always get the flu shot, as well as pneumonia and

meningitis shots each year, at my Neph's insistence. But any colds or

other viruses hit me hard, and I can only assume this is due to a

weakened system. In your profession you really are more susceptible

aren't you. Nasty people with mouths wide open with all manner of

nasties LOL!!!!! BTW.

5, As to your prognosis, if I have read your message thoroughly

you seem have a slow progression of this condition, as have I. Some of

us will never progress to ESRF, but that is really impossible to guage.

I am sure your Neph would have a better idea than any of us.

Hope this helps a bit. If anyone thinks I have written something

incorrectly please do not hesitate to put me right.

Best wishes

Re:

Hello.....I'm new to thi group. I am a 29 year old male with IgA

Nephropathy for the last 10 years. Until recently, when a patient of

mine

(i'm a dentist) told of of his IgAN, I thought I was alone. However,

after

finding this group and reading some e-mails, it looks fairly common.

THANK

YOU. I'm not so scared of the disease and possible ESRF....if it

happens,

it happens....what can you do? You have to live life the fullest. I do

have some questions, that my nephrologist does not like to answer (I

know

that no one else is a professional.....i just would like some input,

PLEASE)

1) Is proteinurea seen as foam in the urine???

2) My blood pressure is well controlled (120/80) and am taking 30mg of

Monopril (ACE Inhibitor) as well as 3 g of salmon daily. However, my

protein loss is 2.20g / day and my creatine is 115 micrmol/L My

cholesterol

level is high at 4.96 (LDL is 3.38). Can anyone guide me to my long

term

prognosis?

3)where is the address for the IGAN chat line?

hope to hear from someone soon.

_________________________________________________________________

Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

Welcome to the group .

I'll attempt to answer your questions below:

1) Is proteinurea seen as foam in the urine?

Yes, but it doesn't really tell you very much about the amount of

proteinuria.

2) My blood pressure is well controlled (120/80) and am taking 30mg of

Monopril (ACE Inhibitor) as well as 3 g of salmon daily. However, my

protein loss is 2.20g / day and my creatine is 115 micrmol/L My cholesterol

level is high at 4.96 (LDL is 3.38). Can anyone guide me to my long term

prognosis?

It certainly is a good sign that your BP is well-controlled on only one BP

med. From the numbers, if I understand them correctly, you seem to have the

flavour of IgAN that is more heavily proteinuric, even though your serum

creatinine appears to be very good (I assume the 115 is serum creatinine).

The proteinuria may come down over time, with the ACE inhibitor, or it may

go down entirely on its own. If it goes higher, your nephrologist will think

about using prednisone to bring it down. I'm sure your nephrologist will be

keeping tabs on that. The key thing is that it's not in what they called

" nephrotic range " (over 3.5 g/day), so, in that sense, it's not too bad. As

for prognosis, even the best nephrologist in the world can't make firm

predictions about this, but, I would say that, unless your biopsy suggested

rapidly-progressive IgAN, your prognosis should be encouraging - many years

before end-stage, if ever. At some point, your doctor might want to put you

on a statin for the cholesterol.

3)where is the address for the IGAN chat line?

If you mean the chat room that is part of this group, go to the home page:

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

....and on the left side, click on Chat. I must warn you that it isn't used

all that much though, but it's there for anyone to use, at anytime. Most

people just post messages as you just did.

Good luck.

Pierre

List owner

Re:

>

>

> Hello.....I'm new to thi group. I am a 29 year old male with IgA

> Nephropathy for the last 10 years. Until recently, when a patient of mine

> (i'm a dentist) told of of his IgAN, I thought I was alone. However,

after

> finding this group and reading some e-mails, it looks fairly common.

THANK

> YOU. I'm not so scared of the disease and possible ESRF....if it happens,

> it happens....what can you do? You have to live life the fullest. I do

> have some questions, that my nephrologist does not like to answer (I know

> that no one else is a professional.....i just would like some input,

PLEASE)

>

>

> 1) Is proteinurea seen as foam in the urine???

> 2) My blood pressure is well controlled (120/80) and am taking 30mg of

> Monopril (ACE Inhibitor) as well as 3 g of salmon daily. However, my

> protein loss is 2.20g / day and my creatine is 115 micrmol/L My

cholesterol

> level is high at 4.96 (LDL is 3.38). Can anyone guide me to my long term

> prognosis?

> 3)where is the address for the IGAN chat line?

>

> hope to hear from someone soon.

>

>

>

> _________________________________________________________________

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

>

>

>

[Guest guest]

Thank you Pierre and for the response. I was always wondering these

questions. It means a great deal for you to answer them. Thanks again.

Judy,the Rn, has raised some supicions though. I think she is right that it

is more a neurology, nerve, problem. As long as it does not get worse, I

think I'll leave the parasthesia in my finger....if it gets worse, I will

see a hand specialist.

Thanks again.

_________________________________________________________________

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

[Guest guest]

Dear -

This is a wonderful work of love! All of us need

guidance. Those of us whose loved ones are not

well-served by their current doctors will benefit

beyond imagination. I'm singing your praises!

Hugs,

Lin

--- wrote:

> This is a database of doctor's I'm working on w/ a

> couple of other

> volunteers. Via the Internet we've been seeking

> Lewy-savvy doctors -

> the list is almost at 800 worldwide... It's a work

> in progress. We're

> at the 'confirming' stage - reaching out to those

> doctors and/or

> facilities to see if our information is correct (so

> far the response

> has been nothing but positive - they're excited

> about this list too!)

>

> I'm only comfortable about recommending those

> doctors I think are

> definite lewy-savvy at this moment - which are the

> doctors that I've

> found via articles re: LBD.

>

> Here's what I have in Kansas:

>

> Lewy-savvy:

> The KU School of Medicine

> Doug S. Neef, MD

> Family Medicine

> Residency Program at Via Christi Regional Medical

> Center, 707 N

> Emporia Street

> Wichita, KS 67214

>

> http://www.vcfp.net/

> Article: http://www.aafp.org/afp/20060401/1223.pdf

>

> That's it...

> There's a memory clinic in Kansas City - but don't

> have confirmed

> doctors yet... but since it's a University I'd guess

> there's one

> member on their team is Lewy-savvy. You should call

> and request the

> name of a doctor who can treat Lewy Body Dementia...

>

> The University of Kansas Medical Center

> Burns, MD (not confirmed as Lewy-savvy yet)

> KU Alzheimer and Memory Program, Landon Center on

> Aging, 3599 Rainbow

> Blvd., MS 2012

> Kansas City, KS 66160

>

> Fax:

> http://www.kualzheimers.org/

>

>

>

>

> >

> > What is this " list " of doctors I keep hearing

> mentioned? I live in

> the

> > Kansas City area.

> >

> >

> >

>

>

>

> ------------------------------------

>

> Welcome to LBDcaregivers.

>

>

[Guest guest]

Dear Amrin,

I am praying for you and grieving with you. I am so very sorry.

Sincerely,

Marit, mum to son with MDS

[Guest guest]

Dear Amrin,

Deeply grived to learn demise of the child. Almighty bless the soul. God

bless the family to bear the loss of unbearable void created. I join IMDSA

Family in the prayer.

Amarjit Singh Anand.

Father of Jasjeet mDs 26.

FCR : India.

>

>

> Dear Amrin,

>

> I am praying for you and grieving with you. I am so very sorry.

>

> Sincerely,

> Marit, mum to son with MDS

>

>