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not feeling myself
- By lookonthebrightside · New reply 9:40 pm
- Discussion in Adults with FSGS · 10 replies
- Hi everyone I useto be more active on here but in the past few months I've disappeared I havent really been takingcare myself either I am always feeling tired and groggy I am getting married in two months ...
Primary or Secondary FSGS
- By L-L-B · New reply 8:52 pm
- Discussion in Adults with FSGS · 4 replies
- I keep seeing people talk of Primary and Secondary FSGS. How does one know which one you have? My Neph never said anything about Primary or Secondary, he just said I have FSGS ...
First time with FSGS/prednisone..worried and confused
- By burchln · New reply 6:07 pm
- Discussion in Adults with FSGS · 12 replies
- I'm 21---and am going through my first treatment of prednisone. I was on 60 mg for eleven weeks...then tapered to 50 mg for two...now I'm in my second week of 40 mg. I go to the Dr. next week with hopes ...
and the ride continues
- By waylonsmom · New reply 4:37 pm
- Discussion in Children with nephrotic syndrome · 2 replies
- We have recently changed nephrologist and are now up at RUSH in chicago. Waylon was tappered off pred aug 13 and has been ++++ for 4 days. So that is 4 weeks total off steroids since Oct 2009. We put ...
Questions answered about N.S.
- By totemo1 · Posted yesterday at 3:56 pm
- Discussion in Children with nephrotic syndrome · 0 replies
- If you have difficulty discussing and answering questions from family members and friends about your child's nephrotic syndrome have them watch this: http://www.youtube.com/watch?v=JtxmvdWyN LM ...
Atlanta Support Group
- By alisan · New reply yesterday at 9:27 am
- Discussion in Fundraising and awareness · 3 replies
- Just wanting to know if there are any of you in or near Atlanta that would like to become part of our Atlanta NephCure chapter. We have been meeting monthly for the last several months and are planning ...
TIRED
- By Jedi · New reply yesterday at 8:11 am
- Discussion in Adults with nephrotic syndrome · 17 replies
- dose anyone suffer with tiredness and depression due to this illness because it seems im tired all the time and sleep so much which makes me depressed ...
MCNS- What after stopping the medicine completely?
- By msm · New reply yesterday at 7:24 am
- Discussion in Children with nephrotic syndrome · 1 reply
- Dear all, My son is now out of all the sorts of medicine. Last month his medicines were stopped as he responded positively. . we are reguarly testing his protein leak. NMT 10 is the aleart limit. In last ...
photo finish?
- By Diehard20 · New reply September 3, 2010
- Journal · 4 replies
- My photo was lacking for so long. My son did it in a few minutes for me! "I'm everywhere " oh my gosher, I never? All about me! me,me,me! Alf, I'm almost the only one, close to it, that uses that site ...
Low Protein Diet?
- By Alfonso123 · New reply September 3, 2010
- Discussion in Adults with FSGS · 22 replies
- Is anyone on a low protein diet? My neph hasn't said anything about my protein intake ...
Albumin infusion?
- By ashleighs_mummy · New reply September 3, 2010
- Discussion in Children with FSGS · 11 replies
- Hi everyone, its been a while since i have been on here, but my daughter is 6 and has had genetic FSGS since she was 13 months, we have tried all the meds and nothing has worked, we cant up her meds as ...
What do you do for a living unrelated donor?
- By bro · New reply September 3, 2010
- Discussion in Adults with FSGS · 5 replies
- I had a tx last year from a living unrelated donor. I am so thankful for her. We stay in contact and we love them but I just don't know how far to go. I don't want to bug them to death but I don't want ...
Pittsburgh and surrounding areas
- By buffie · New reply September 3, 2010
- Discussion in Fundraising and awareness · 5 replies
- Hi everyone! We are trying to start a chapter in Pittsburgh, PA, and the surrounding areas! Please respond to me if you are in the area and are interested! We want to do support groups, walks, and anything ...
MCD prednisone vs. cyclosporin
- By fatface · New reply September 3, 2010
- Discussion in Adults with nephrotic syndrome · 6 replies
- I went to the neph doctor yesterday and found out that after 4 months on 80mg of prednisone my protein leak went from 5.3 - 4.6. Which is better but still not where I need it to be to go into remission ...
NephCure has 3 New York Marathon Spots!
- By NephCureNadia · Posted September 2, 2010
- Discussion in Fundraising and awareness · 0 replies
- NephCure has just acquired 3 spots in the New York Marathon. If you or someone you know would like to run in the most famous of marathons as a fundraiser to fund research for FSGS and Nephrotic Syndrome ...
FSGS + SEIZURES
- By TLRFSGS11 · New reply September 2, 2010
- Discussion in Adults with FSGS · 3 replies
- hello, this is my first time in a discussion. but i have been diagnosed w/fsgs for 11 years im 43yo, i started having seizures 5 years ago im not on steroids, dialysis. i just became allergic to lisinisopril ...
remission during cough & cold
- By mdcool · New reply September 2, 2010
- Discussion in Children with nephrotic syndrome · 1 reply
- Hi friends My son has been dx with Minimal change ds in 2008, he was in remission for a year & this yr back with 4 relapses. The last one was during a cold,it was trace for 3 days & 4th day it was +3 ...
Remission signs and symptoms
- By MichelleSC123 · New reply September 2, 2010
- Discussion in Children with nephrotic syndrome · 9 replies
- My son, 2 years old was diagnosed with Nephrotic Syndrome about 4/5 months back. He has had 2 relapses since then, one accompanying a convulsion. The last 2 weeks have been terrible! We had bloods done ...
Week One.
- By DenishaDonna · Posted September 1, 2010
- Journal · 0 replies
- The first week of cellcept was fine, i didnt feel as much pain . when i had predisone. But Im feeling okay and I pray that it stays that wayy. Oh yeah, my foot is still kind of swollen . Thank you for ...
social security disability
- By wedad · New reply September 1, 2010
- Discussion in Adults with FSGS · 15 replies
- Hello, I was wondering if any of you have applied for social security dis.and still working,how long did it take and were any of you denied. I can't continue to work full time and totally fatigue,and ...
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