Dear David
What does FSGS stand for?  And PKD (Polycystic kidney???)

I am among the lower eschelon of medical caregivers, but I think you would
know if you had kidneystones.  Especially for a male, this experience can be
"exquisite," so I am told.

Do you have any other symptoms of lupus?  I like your attitude toward
diagnosis... that seems to be a realistic feeling... a dx is an ethereal
thing that can (and does) change and evolve, and good docs know this.  My
rheumie has never told me I have "lupus"--when I ask him he sits down and
draws me what is called a Venn diagram: three circles that overlap: one is
autoimmune thyroiditis, one is Sjogren's Syndrome and one is Systemic Lupus.
That's whas he says.  Then he shoves the paper at me and starts fondling my
finger joints and the lymph nodes in my neck....

Welcome to our group... no matter what your diagnosis, it is very nice to
have men posting to our group.

Wishing you the best of health,

Mary

Helllo everyone.   I'm a 34 year old who has been diagnosed with
FSGS.  As a twenty-one year old, I was famous for my ability to
urinate for long periods of time.  However, what once gave me "status"
among an admittedly strange group of people eventually led me to a
urologist after experiencing pain while urinating.  I went through a
battery of tests, 24 hours urines and years later a punch biopsy.
During my biopsy, attempts to secure a sample were made difficult by
what was described to me a "rubbery" kidney.  They literally a number
of stabs at it, and finally came up with sample that was
inconclusive.  As a result, I always considered my diagnosis more of
an educated guess than a certainty.  For years (I was diagnosed at
21), my kidney function remained relatively stable.  Without symptoms,
I engaged in denial...drinking, smoking, not looking after my diet,
etc.  Recently, however, I began experiencing pain (albeit very dull
pain) while urinating.  I also have had repeated attacks of lower back
pain.  I initially thought this the result of a herniated disk,
although I've begun to question that.  I sometimes feel pain when my
kidney (I should also explain that I was born with only one kidney, or
one was absolved during childhood).  I have hematuria now and have
leaked protein for some time.  My levels, at last check, were
elevated, but real high.  I no longer urinate like I used to, as it
appears that my flow is weak and much shorter.  Have other people
experienced things like this?  At my last visit, my doctor mentioned
that via x-ray, he thought my kidney was enlarged and saw shadows...I
therefore had a CT scan and am awaiting the results.  I never thought
I'd say this, but I'm hoping of Kidney stones.  Has anyone out there
been diagnosed with FSGS only to find later on that they have PKD?
I'm just trying to learn more, and would like to hear about the
experiences of others.  Whatever is going on, I've been quite
fortunate that I've stayed in relatively good shape for so long,
especially considering my behaviors.  Now, however, i am worried.  I
have a feeling that things are getting worse and it's affecting me
mentally.  Any advice or experiences you could share would be of great
help.

Thanks,

David

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

David,
I suggest that you copy and paste your post in these two newsgroups since
there are people in those newsgroups that may be able to help you:

alt.support.kidney-failure
alt.support.kidney-disease

Also, I suggest that you read this book:
"Coping With Kidney Disease"
by Mackenzie Walser, M.D.

Kidney stones are discussed on as least three pages of that book.
After reading the book, you will know for sure whether or not you have
kidney disease. If you do have a kidney disease, Dr. Walser discusses a
treatment program that may prevent you from ever needing dialysis.
If your creatinine level is above 2.0, that could indicate that you have
major kidney problems.

Jason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

FSGS.... My Stedman's Abbreviations book tells me that it is
"focal segmental glomerulosclerosis." wrap your lips around that puppy.
 And I was right about PKD--Polycystic Kidney Disease.
Wow, dude.  That's interesting, but also, like, a real bummer.  Especially
since your other kidney is absolved.  At least we know that it is in heaven.
I am not making light of your condition...but what good is it to lose your
sense of humor?  I had a kidney infection (pyelonephritis), and yeah, my
back hurt... that was the first symptom.  It felt like muscle spasms in my
back, but when my temp kept going higher and higher, they figured kidney,
and put me in the hospital with IV fluids and antibiotics.

I can see why you are hoping it is kidney stones.  Good luck with the CT
scan and let us know how you are doing.

It is hard to be sick with this kind of stuff when you are relatively young.
I, along with several others that I know, have had lupus (or whatever
illness) since childhood or teen years. You are always welcome here if you
need support, no matter what your problem seems to be.

Be well,

Mair