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Adults with FSGS
Discuss your experiences with FSGS here.
Diet with FSGS
- By jyakubov · New reply 7:43 am
- 4 replies
- I am new member to this site-- I just recently got diagnosed with FSGS about a month ago. I have not yet started treatment (specifically prednisone) because I want to get 2nd and 3rd opinion from other ...
secondary FSGS
- By lookonthebrightside · New reply yesterday at 11:32 pm
- 8 replies
- Hi, I was just diagnosed today with secondary FSGA. My doctor made it seem like i was lucky i was diagnosed with this and not something else. I have spent the day researching online and i am seeing that ...
The Time before Dialysis/Transplant
- By smile213 · New reply yesterday at 6:07 pm
- 29 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 ...
Phosphorus binders
- By MooseMom · New reply yesterday at 1:17 pm
- 3 replies
- Does anyone here take phosphorus binders? My mother is on dialysis (doesn't have CKD, but instead has no renal function because of unrelated surgery), and she has to take them, and she just does not get ...
What if we get Swine Flu?
- By MooseMom · New reply yesterday at 1:08 pm
- 5 replies
- Ok, so we all have an underlying medical condition, and I am assuming that at least most of us are immunosuppressed, meaning that we need the H1N1 vaccine, right? I volunteer at our local hospital, just ...
Tell me about your neph
- By MooseMom · New reply yesterday at 10:30 am
- 18 replies
- I'm just curious... We're all in this for the long haul. Our nephs (and their usually unlauded assistants) become very important people in our lives and will probably remain so for a long time, if not ...
Pregbancy with FSGS
- By louann1982 · New reply November 18, 2009
- 8 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 ...
Flu Shot Experience
- By GinnyO · New reply November 18, 2009
- 7 replies
- I wanted to comment on my recent experience while getting a flu shot. I got my shot at the Minute Clinic at our local CVS. For the first time in my life I was asked if I agree to take a shot with a preservative ...
Secondary FGS
- By JaiJai · New reply November 18, 2009
- 20 replies
- So I just recently found out that FGS and FSGS are different. FSGS is primary which can respond to steroids, etc. I don't have the "segmental" type, I have secondary which does not respond to any steroid ...
LEG PAIN
- By Tyree · New reply November 12, 2009
- 3 replies
- I having been having leg pain for over a year now and my docs don't think that it is realted to my FSGS. Does anyone else have leg pain? If so what have the said it was and how is it getting treated ...
How many nephrologists must I go through!
- By JaiJai · New reply November 10, 2009
- 2 replies
- So I had my first 3 month check-up appointment since diagnosed with FSGS. A few weeks ago I went to another neph for a second opinion about my treatment. When I had my appointment today the methods of ...
FSGS and Anemia
- By msoko · New reply November 10, 2009
- 9 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 ...
Is Sense of Taste Being Affected By Meds?
- By Andre33 · New reply November 10, 2009
- 11 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 November 7, 2009
- 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 ...
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 ...
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 ...
Events and resources
