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Adults with FSGS
Discuss your experiences with FSGS here.
Is Sense of Taste Being Affected By Meds?
- By Andre33 · New reply yesterday at 9:51 pm
- 6 replies
- Used to eat Jif peanut butter right from the Jar. Loved it. Now ALL peanuts and peanut butter has a "burnt" taste to me. So does some chocolate. (So much for the Reeses). Anyone else have this happen ...
FSGS remission after oral galactose therapy...
- By maaxiim · New reply yesterday at 4:11 am
- 32 replies
- Some cases of nephrotic syndrome in focal and segmental glomerulosclerosis (FSGS) are associated with a circulating factor, the FSGS permeability factor (FSPF). Galactose has a high affinity for FSPF ...
Pregbancy with FSGS
- By louann1982 · New reply November 6, 2009
- 5 replies
- Hi im 28 years old with FSGS, under the care of a specialised nephrologist. Hes advised against pregnancy until total remission is reached. Can anyone share with me their experiences or cases. Thanks ...
The Time before Dialysis/Transplant
- By smile213 · New reply November 6, 2009
- 16 replies
- I would like to ask about experiences with the period of time right before dialysis/transplant is necessary. How was it decided that it was time for this? Were there physical signs? How high was your ...
Muscle spasams and cramp HELP!!!
- By Tyree · New reply November 6, 2009
- 30 replies
- Lately I have been having the worst muscle spasams and cramps. Sometimes they alternate from leg to leg every two hours. Its gets very bad to the point where I am screaming or crying for relief. I have ...
Low albumin level - advice
- By CrashTestDummy · New reply November 3, 2009
- 18 replies
- Hi I was diagnosed with FSGS in february this year. Since that I have been on Prednisolon (strarted with 60mg a day and now I am on 20 mg/day) and later on also Enalapril for the blood preasure (even ...
does anyone notice a pattern?
- By dink2061 · New reply November 2, 2009
- 4 replies
- It has been a LONG time for me, 30 years roughly, but I was wondering if anyone notices a pattern to the swelling? First in the legs and ankles, then the hands and then......it seems it all goes to the ...
Joint cartilage damage and FSGS/CKD
- By DennisD · New reply October 29, 2009
- 3 replies
- I am 59 and facing my second hip replacement. My ortho also sees vertibrate compression he is worried about. I've never been in a hospital or had any issues for my first 55 years, even playing full court ...
What if nothing works
- By birdlegs · New reply October 29, 2009
- 1 reply
- My last two treatments have not improved my spillage at all. My Dr believes that I have progessed to stage 3 CKD. I've just started Cellcept for the next two months. Just in case this doesn't work either ...
FSGS and Anemia
- By msoko · New reply October 29, 2009
- 7 replies
- Anyone out there suffer from Anemia? I have had FSGS since 1995 and ever since have had low hemoglobin. My doctor always tells me that she does not know why because my kidney function is too good to have ...
new diagnosis,
- By lifedrills101 · New reply October 27, 2009
- 2 replies
- I am wanting a second opinion on the treatment options in Nashville, TN. Does anyone have a reccommended Neph in Nashville or the surrounding area ...
Primary FSGS
- By klocka · New reply October 25, 2009
- 4 replies
- Just wanted any possible feedback from anybody with this disease? I am currently at stage 3 with GFR of 42 three months ago was at stage 1 with GFR over 60. Been on all the immuno drugs and have never ...
Question with creatinine levels
- By Chrissytosh · New reply October 23, 2009
- 4 replies
- I've had FSGS for 10 years now and have never not spilt protein. I've been on prograf for 3 years now at 2mg 2x daily. My creatinine has consistanty been under 1. I had a Dr appointment on tuesday and ...
FSGS Remission
- By Allan · New reply October 23, 2009
- 28 replies
- Hello all. I've noticed some people saying that their FSGS is in remission after having the disease for X amount of years. My question is, was it after being on a certain drug therapy or did it accur ...
Early Treatment Questions
- By lifedrills101 · New reply October 21, 2009
- 6 replies
- Just diagnoised classic FSGS last week. After freaking out for the weekend, I am now trying to make sure I am on the best plan for remission. Current tx is Lisinopril 80mg(bp not going down enough yet ...
Back (flank) pain
- By Tanya1 · New reply October 21, 2009
- 3 replies
- was wondering if anyone else has back or flank pain. For the past 6-7 mo I have had pain on the left side of my back. It is like a muscle spasm sometimes. I read where this is comon with people that have ...
Chronic Gastritis
- By msoko · New reply October 18, 2009
- 1 reply
- Hi, I was wondering if anyone else with FSGS suffers from chronic gastritis? I was diagnosed last year after being hospitalized for dark stools and a low hemoglobin. The doctor performed an Endoscopy ...
New to NephSpace
- By Mrs_C · New reply October 16, 2009
- 12 replies
- Hi! I am new to this website (obviously lol), I was diagnosed as having kidney problems in late May early June and was eventually diagnosed as having FSGS towards the end of June. I've been on Prednisone ...
Hemo vs. PD Dialysis....personal expreriences.
- By fsgsblahs · New reply October 14, 2009
- 28 replies
- I am sure there is already a thread on this somewhere, but there may be new people with input. What I would like to know, is why people change from one type of dialysis to another...personal experiences ...
Gallstones, anyone?
- By MooseMom · New reply October 12, 2009
- 5 replies
- I know I have gallstones because they were detected during an examination for something else entirely. In the past three or four years, I have had the occasional attack that I really suspect are gallbladder-y ...
Events and resources
