Journals

First Blog

Morse
  • By Morse · Posted February 3, 2008
  • 2 replies
  • I decided I needed a place to vent and express what is going on so I decided to start this blog. I was diagnosed with MCD a little over 4 years ago. I went through 18 months of prednisone. Some how or ...

No more Steroids

allisonejw84
  • By allisonejw84 · Posted January 30, 2008
  • 7 replies
  • So, I have been on prednisone for a year now. I came off of the steroids for about 2 weeks last July, relapsed, and that is when I got my second biopsy that changed my diagnosis from Minimal change to ...

North Jersey Chapter NephCure

DonnaColucci
  • By DonnaColucci · Posted January 30, 2008
  • 0 replies
  • Hello everyone, I hope that everyone is settling back into the regular routines from vacations, holidays and the New Year. My father passed away December 1, 2007. God Bless you Dad. I am remembering him ...

FSGS along with polymyalgia rheumatica

Beemac
  • By Beemac · Posted January 29, 2008
  • 2 replies
  • Has anyone that has FSGS also have polymyalgia rheumatica. I developed it about the same time I was diagnosed with FSGS. Very interesting don't you think ...

Trying to get my life back

Lori2
  • By Lori2 · Posted January 29, 2008
  • 5 replies
  • Ever since diagnosis in june 2007, and the start of prednisone and now cycosporine, I feel like my like has been totally rearranged. I get the shakes, I cry alot, I stutter and stammerr sometimes. MY ...

What a week

amyb1
  • By amyb1 · Posted January 28, 2008
  • 0 replies
  • We are not even a week into our diagnosis and yet it feels like I've been thinking, worrying and learning about NS for a LONG time. There seems to be so much helpful info out there and most importantly ...

Hair loss due to prednisone

Lianerhymes
  • By Lianerhymes · Posted January 4, 2008
  • 4 replies
  • I was diagnosed with MCD in July 2007. was on a long list of medications including Prednisone. Recently from coming off the medications my hair loss has increased drastically. Is this from the prednisone ...

First Time

KatieR03
  • By KatieR03 · Posted December 14, 2007
  • 5 replies
  • This is my first blog. I'm excited to talk with other people who share the same feelings that I do, since I don't know anyone else persanally with this disease. I was diagnosed with FSGS in April of 2005 ...

diagnosed over a year ago.

sk1
  • By sk1 · Posted November 1, 2007
  • 6 replies
  • I was diagnosed over a year ago and am unable to receive treatment because I lost my job a week later. I did not seek new employment because I lost my job for missing time due to constantly being sick ...

Introduction, finally

DonnaColucci
  • By DonnaColucci · Posted October 14, 2007
  • 1 reply
  • Hi, this is the first time I am trying to blog. It sounded like a good idea to me, put your feelings down and rid yourself of them, and move on. I am Donna, After 9 years of dealing with MCNS, our son ...

Growing up with NS/MCD and 22 years Later CKD Returns

VernaGail
  • By VernaGail · Posted September 18, 2007
  • 0 replies
  • I was diagnosed at nineteen months of age with NS/MCD. I took many different medications as a child and with having childhood NS/MCD that is the reason that I'm classified secondary FSGS. Back then they ...

first time blogger

scott1
  • By scott1 · Posted September 9, 2007
  • 16 replies
  • hi my name is scott im from australia and i have had fsgs for approx 15 years.I am currently under going tests again,steroids,blood pressure,cyclosporin ect.i am very interested to hear from all those ...

INFORMATION (FSGS)

DANPET71
  • By DANPET71 · Posted September 2, 2007
  • 0 replies
  • Hi All I have found a site that should answer many question we all might have about (FSGS) http://www.nephcure.org/Research_latest. html This might be of help for the new people to gain more information ...

Newly Diagnosed

Tanya1
  • By Tanya1 · Posted August 30, 2007
  • 2 replies
  • I was told the results of my biopsy this week, it is FSGS. But I don't see my neph for another month. What are some things that I can do until then to help with the protin spill (27 grams). I read about ...

Prednisone

shannon2
  • By shannon2 · Posted August 20, 2007
  • 1 reply
  • I just want to tell you that prednisone is a wicked drug and you should look into it "BIG TIME" It has murdered my bodya nd I would ahve never taken it if I knew what it would do. However it has seemed ...

FSGS

DANPET71
  • By DANPET71 · Posted August 18, 2007
  • 0 replies
  • Hi I just got my Kidney needle biopsy and it's FSGS. My Doctor wants to see me in three months. Just watch my diet. I am 70 years old I have never been sick, I am not any meeds. I am looking for drug ...

Stress

Reneaorr
  • By Reneaorr · Posted August 13, 2007
  • 2 replies
  • My daughter has been in terrible pain for several months. We have done x-rays, Cat scans and Mri as well as a ton of blood work. Recently tests have shown her Uric acid levels are high which could indicate ...

I am glad that we can all now communicate

nlspecialties
  • By nlspecialties · Posted August 9, 2007
  • 4 replies
  • Hello, my son was diagnosed with FSGS at 18 months old and I just always wanted to get in touch with other families who have gone through the same things we have been through. It has been a very emotional ...

First Blog Log

Dave2
  • By Dave2 · Posted August 9, 2007
  • 1 reply
  • This is nice. I'm glad Nephcure has made it even easier to communicate with those of us who share a certain something special. If there is anything I can do to answer any questions any young people or ...

Blakes Story

nnpalmer
  • By nnpalmer · Posted August 9, 2007
  • 1 reply
  • My son Blake now 8 was diagnosed with NS 5 years ago. In that time he relapsed many times and had to have half of his right kidney removed. Blake was on Prednisone for 4 and 1/2 years and is now on Prograf ...

Things you can do

Discussion topics

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