I have all 3 - FSGS, NS and MCD.
With the wonderful HIGH cholesterol that never goes down and high bp. Oh and the never ending edema...anyone?
I have all 3 - FSGS, NS and MCD.
With the wonderful HIGH cholesterol that never goes down and high bp. Oh and the never ending edema...anyone?
Posted in:
I am not all that familiar with MCD, but why do we hear how so many people started with MCD and then it moved on to FSGS? I just kind of figured that when it is in the beginning it was MCD, and as it progresses, it turns into FSGS. I will have to read up more on that.
I don't have NS...at least the docs have never said anything about it. They do list a dx as proteinuria, but my spill stays between 1g - 1.7g. I was thinking that NS has to more than 3g spill? My spill doesn't seem to change much, but my kidney function keeps deteriorating.
I started at 17!!
Now I am down to 7...even better at stage 3 after 2 years at stage 2.
Hi MamaG,
I am sorry that you have all three, that really stinks! I am wearing my compression stockings today, I have been bad w/salt and I am so swollen! I am going to get back off the salt train as of today (my bad!). I just want normal looking ankles (in addition to everything else) it is just so uncomfortable! I think I have NS b/c of the protien spillage? Isn't that part of MCD or FSGS?
fsgsblah's - for MCD turning into FSGS, my understanding is that MCD can only be seen under a electron microscope and at that time it can look the same as early stages of FSGS, so sometimes if FSGS is caught early then it looks like MCD but later on when the MCD does not go into remission another biopsy is performed to rule in/out FSGS.
My MCD has gone into 'partial' remission, my Neph thinks now could be FSGS since I have not gone into remission in 10 months of pred (supposed to be 4 months to get MCD into remission, max), meaning they caught my MCD early.........however, I had unexplained edema for 7 years prior to my MCD diagnosis, so I am really at a loss since the prednisone helps my ulcerative colitis, I don't know why it wont help my kidneys!!!!!!!! unless it's FSGS, but I think I have had whatever it is for 7 years, so I would think that I have MCD otherwise wouldn't my FSGS be further along?????????? AAAAAAAAAAAAAAAAAAAAH! I just keep on going in circles!
BOY DO I get what your saying...it would drive me nuts too!!!
food is my spinning circle...how much salt in this, how much cholesterol in this, how much have I had today, oh man I went over today, and so many more questions every day. then there is the meds we take..did I take it, was it enough, did I call it in, crap I forgot it again, is the med making me sick, which med is making me sick, what side effect is this one from and when will it be over?
I'm with ya hon all the way!!
lol, thank goodness my pharmacy has a drive through, I think I am there like twice a week!
my pharmacist knows me when i drive up. it's sad, really.
So, this may sound stupid, but I thought it was either MCD or FSGS. I didn't realize that you could have both. How do they determine that? Originally I was told that I had MCD but when I didn't go into remission on the pred they did an open biopsy (they kept getting healthy tissue on the needle biopsies) and they came back with FSGS.
And Beth - FSGS is a progressive disease, but it doesn't progress at the same rate in everyone. You very well may have FSGS for 7 years without much progression. Heck, I've had it for 22 years without much progression. In fact, I don't think my funtion started decreasing until somewhere around 11 years after diagnosis. Funny thing is, that's also when my protein levels went below 2. Weird. I just realized that. Anyways, the only real way to know if you have FSGS is through biopsy.
Anyways, I really am curious how someone can have both MCD and FSGS.
When they did the biopsy I was told before that I had Nephrotic Syndrome but that something caused that so I needed a biopsy. when I got the results it stated on there that I had FSGS - tip lesion and MCD which gave me NS.
I found this:
Focal segmental glomerulosclerosis
is a cause of nephrotic syndrome
in children and adolescents, as well as an important cause of kidney failure in adults.[1] Minimal change disease (MCD) is by far the most common cause of nephrotic syndrome in children: MCD and primary FSGS may have a similar cause.[1]
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
With more research I found that most of us live with FSGS until we get worse. Then either MCD shows up or NS...or both.
The FSGS most likely will bring NS and/or MCD. From what I understand in the sites I have found.
You can get just MCD without FSGS.
I love how I keep reading that it is in children, black males, males and HIV patients....none which apply to any of us!!
Whats scary is all the other crap you find when looking for info!!!
So what's my chances of just having FSGS and not the others. I'm still pretty new to this. I have stayed on stage 2 for about 8 yrs. Did the stages go fast with you guys?
Your chances of having just FSGS are pretty good. I just have FSGS right now, though I have had NS in the past. And it took me about 18 years or so to get to stage 3.
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