Re: Hello (Joleen)

February 17, 2005

Hi Joleen,

I am so sorry you have had so many medical challenges at such a young age.

You certainly have had lots to deal with.

What you are describing does sound like flank pain which some of our members

get. The visible blood in your urine is also not uncommon with IgAN.

Actually though, the prognosis is better for those who get visible blood than

for

those who only have microscopic blood.

I am glad they are referring you to a Nephrologist though. Please let us

know what they say.

I do admire your determination to not let your health get the best of you!

In a message dated 2/17/2005 7:52:09 A.M. Pacific Standard Time,

Bjtlbaughman@... writes:

Good morning,

Thank you all for such a warm welcome. I am a 34 year old mom with

two children and married to a wonderful man for almost 15 years. I

have whats called protein " s " defiecency(sp?) I have a history of

strokes, had a total hysterectomy at 25, had lumpectomy two years

ago, history of kidney problems. In 1999 I finally went in because of

all the pain I had been having and they could not find kidney stones.

Since then I have had major pain in my groin, lots of blood in my

urine and when I finish urinating I have milk like substance (protien

I have been told). Sometimes my urine looks like coke or tea other

times you can barely see the blood in it. In July of this last year

the doctors swore that I still had stones and so I under went

lithotripsy only to wake up and they told me that the spots they saw

were not stones but on the backside between the liver and kidney.

The doctor said that he thought I had what is called flank pain

hematuria syndrome or IGAN. That is where we are right now. In alot

of pain, sometimes to the point where I cant even stand up. I have

had so many cat scans, MRI's. blood tests, etc.

I am very active and do not plan to let this get the best of me ;0)

If anyone has any suggestions or comments I would greatly welcome

them. Oh and they are trying to squeeze me in to see a kidney doctor

too.

Have a great day!! Joleen

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