Confused about FSGS!!

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virginia
Posts: 16
Joined: Sat Jul 17, 2004 2:44 pm

Post by virginia »

Hi again. My doc has never put me on any type of steroid at all. He decided against a biopsy as one kidney is very small and scarred and the other is only barely functioning.....so he's guessing on the fsgs diagnosis as he says that's what usually happens to kidneys as a result of reflux scarring. But sometimes he writes interstitial nephritis on my lab test papers.

I was really concerned about diet and asked my doc about restrictions. He didn't seem too interested and said people usually look and feel worse when put on the low protein diet. Who knows....so i've taken matters into my own hands a bit there in an attempt to at least not have to take off so much time from work sick. (People think that if you're not lying in hospital then you're not really sick....which makes work life a little difficult at times.) Although co-workers are constantly telling me I ought to go and see a dr. about that dizziness you get when you stand up. Even if I told them what I have I don't think it would make any difference in their perceptions. oh well.

This doctor has left the area recently though and I'm supposed to start seeing another in Boston soon....maybe he'll have a different idea Probably a different diagnosis too by the sounds of it!

Energy levels are a difficult thing.....I take a lot of naps and people tell me I'm like an old woman in that regard! I'm normally a very active person too so I get very frustrated with myself for needing to fall asleep all over the place. I'm not even anemic.

Is your insomnia related to the fsgs? What other problems did you have at 50%? This disease is very sketchy all round, isn't it? A lot of "might's" being flung about.

virginia
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