New member

[Guest guest]

k,

Welcome to the group. You will definitely find a lot of information

on IGA from this site--everybody here is so incredibly helpful and

supportive. Although I am sorry that you were diagnosed. I hope

you are doing well, you are also in my prayers, and God bless you

too!

Take care,

> Hello,

>

> My name is k. I am a pastor in Yogyakarta Indonesia. I have

just returned from having a medical check-up in Singapore and I was

diagnosed with IgA Nephropathy. Now I need to find out all I can

about this disease. I hope that this list will give me with much

useful information. In addition to this I will continue to trust

God for His mercies and of course pray for all of you on this list

who are also suffering with the same disease.

>

> God bless you all,

>

> Pdt. k Venden, ST.h.

>

>

>

>

>

[Guest guest]

Hi .

Welcome to the group. I think you will find that just about all the kids

associated with this group have had a biopsy to confirm what kidney problem

they have. It's a pretty simple procedure, really. The thing is, while a

nephrologist can guess IgAN from the symptoms, it really is just a guess

until a biopsy confirms it. There are many types of glomerular kidney

disease. Will the information from a biopsy affect the treatment? Probably

not if it turns out to be very mild IgAN, but it may if the decision is that

it could benefit from more aggressive treatment. Watch and wait is a viable

option if it's more obvious from the symptoms that it's mild IgAN. But I

would say that from your description of the symptoms in your son's case, it

may not be that obvious. Sometimes it turns out to be thin basement disease,

which is much more benign than IgAN. So it's possible a biopsy would provide

some peace of mind just from knowing more clearly what the problem is.

Pierre

[igan}new member

> Hello,

> My name is . I have a 14 year old son who is suspected to possibly

> have Iga nephropathy. He has juvenile ankylosing spondylitis. He has been

> having extremely bloody urine 3-4 times a week since May. His renal

> ultrasound was normal, IVP was normal, 24 hour urine showed elevated

> calcium excretion. We went thru workup with a local ped nephrologist all

> summer and now he has left town. We are going for a second opinion in

> another city in about 4 weeks. My son's urine has no protein when it is

> not obviously bloody. However, when it is frankly bloody it is positive

> for protein.

> My question is, if a renal biopsy is the next step, do I consent to this?

> Will the information yielded enable this condition to be treated at this

> early stage? Or do we watch and wait. I am very puzzled about what to do.

> Any thoughts are appreciated.

> Thanks for your help.

> and Rob 14 y.o.

>

[Guest guest]

Hello, Donna,

You have come to the right place. While my Hypothyroidism was known about

when I was in my late teens, it was not treated until 1991. I am now 57,

so the " lag " in getting treatment caused a whole host of problems, not the

least of which is weight gain.

Most recently, my family doctor (Internal Medicine specialist) increased

my Armour dose by adding 1/4 grain. He tends to rely heavily on the TSH

test, which is pretty useless in my estimation. I began seeing a different

doctor in connection with the Thyroid problem and he is starting treatment

with the existing dose of Armour at 120 mg per day (split into two 60 mg

doses) and adding 2.5 mg Cytomel. I will be starting this new regimen

today -- after I see my family doctor to let him know what I am doing that

is different. The new doctor is over 125 miles from my home, so I need to

keep the local doctor " in the loop " .

Anyway, the 1/4 grain increase did help! I like being able to get through

my entire day without the horrid fatigue that was plaguing me for so

long. The problem is that I still have other symptoms and wish tog et rid

of them.

The weight gaining seems to have leveled off and I have begun losing some

small amounts, but that could as easily be due to my diet, which now is

high protein and lower carbohydrate.

You will find that the support in this group is great. We post our lab

results here showing the name of the test, the results, and the normal

ranges. That means that you will have to get a copy of your lab reports,

or write down your test results with the lab's " normal " ranges. Just ask

for them at the front desk at your doctor's office. Mine will let me have

copies. Some offices charge for the copies.

Dianne

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[Guest guest]

Wow, what a lot of information available in this group!

My grandfather, his sisters and my mother were diagnosed as CD 10 or

more years ago. They have all treated it as a non issue in their

lives. Usually they just avoided products with wheat, but if they

felt like eating something, they did and dealt with the 'side

effects' later.

After two years of constant acid reflux (which was not one of their

symptoms), I was diagnosed as well. Fortunately, my doctor explained

that it was a lot more serious than a little indigestion or diarrea.

I have tried to explain this to my Mom, but it stll makes no

difference to her. Well, to each his (or her) own.

Our house is pretty well GF now. Even though neither of my girls (20

& 14) have been tested yet, they are pretty careful about what they

eat. Neither one has any symptoms so far, but I tell them that it is

never too early to get used to the new way of eating.

So thanks to all who are passing along information to those of us who

are just starting out.

Patty