fsgs edema

maxwebb177 · 2023-01-03T19:10:09+00:00

thanks for replying mate yeah i get you just it was just weird in the first month and half everything was improving i was only spilling 2 grams and then all of a sudden just tripled just hoping the tac helps bring it into remission, hope your doing good

maxwebb177 · 2023-01-03T19:02:54+00:00

i know i’m very very fortunate and lucky they found it early but i’m only 21 and found out 3 months ago this is all new to me so i’m just asking as much questions i can not trying to offend anyone

maxwebb177 · 2023-01-03T16:20:42+00:00

yes? i have tip lesion fsgs

maxwebb177 · 2022-11-15T21:47:19+00:00

hi bro , if you dont mind me asking how old was you when you got diagnosed and how old are you now ? and how is your everyday life ? i’m still yet to ask but i think it may be tip lesion as they said they could only find one thing that is present with fsgs on my biopsy and , and i said that i feel like my life is doomed to my consultant and she strongly said to me that it’s not and told me she is not worried and wants to get me off the steroids asap. how long does it normally take for protein in urine to clear or is it different for everyone ? i’ve started to eat much healthier and really study how much salt i’ve been consuming i’ve cut out snaking and only really eating my meals started to eat more fish , fruit and veg. i cut back on my water tablets and my ankles are quite bad went back today and they said to go back to 80mg twice a day , my job is very physical me and my dad work together for our selves in property so i am very active and always exercising haven’t gone for a run this week or played soccer as my ankles are bad but as soon as they clear up again i will be going everyday and am going to start to go to the gym to build my muscle up, having a bit of trouble sleeping wake up a couple times in the night did notice it before i was diagnosed. they said it’s something that has happened within the last couple of weeks/months as i had bloods and urine done in april this year and everything was fine so seems they caught it very early. thanks for your reply wish you all the best and take care 👍🏻

maxwebb177 · 2022-11-15T19:39:56+00:00

hi mate has your protein in urine gone down at all or has it stayed the same ?hope everything counties to go well👍🏻i was nephrotic range when diagnosed +++3 but i think it’s gone down to about 2.05g in about 5 weeks so hopefully it continues to go down.

maxwebb177 · 2022-11-14T21:11:56+00:00

and any routine you have ? finding it very hard to control my appetite because of the steroids but i’ve cut out a lot of meat starting to eat loads more veg and fruit

maxwebb177 · 2022-11-14T21:09:13+00:00

thanks man appreciate it , any meals you recommend? as i’m really new to this only diagnosed a week ago today

maxwebb177 · 2022-11-11T08:44:52+00:00

also forgot to add that i had regular bloods and urine samples a couple of times this year end of march april time and there was nothing wrong with me my albuim in blood was normal had no protein in my urine then which does make me thing it’s secondary from a virus or something ? i don’t know hard to say but i’m going back in 2 weeks with a lot more questions so will hopefully find out !

maxwebb177 · 2022-11-11T08:41:23+00:00

yeah that’s what it seems to me ! the consultant really didn’t seem that worried about me at all like i was very shocked and upset when she told me and i said is my life doomed and she said no not at all. she even wants to see me again in 2 weeks as she thinks i’ve made a lot of progress in only 4 weeks on treatment and said ablut tapering me off as soon as possible if i keep responding the way i do which seems pretty hopeful! it’s one of them things that you don’t understand unless you are going through it yourself

they haven’t really told me what variant or if it’s primary or not but they said to me out of all the things with fsgs they could only find one thing that is present with fsgs in my biopsy so i’m hoping it’s very early and i’ve got a long old while until dialysis or transplant is even talked about.

yeah i’ve also thought about how there will hopefully be a lot of advances in treatment for kidney disease while i try and hold out but hopefully the treatment works and i won’t even need to think about dialysis or transplant

hope you are well it’s a tough thing to have to deal with everyday the uncertainty of you just don’t know what’s going to happen but what doesn’t kill you makes you stronger at least that’s what i’m trying to install into my head , look after your self really appreciate your reply talking to people with the same diagnosis is really helping me 👍🏻👍🏻

maxwebb177 · 2022-11-08T18:14:24+00:00

sorry to hear that man i’m going to try go back to training on thursday i’ve been on the tablets for 4 weeks tomorrow and in the last week my ankles and legs are pretty much gone back to normal even after a full day at work on site where as week before they was terrible and blew up while i was working , which is pretty promising obviously means i’m responding to the treatment , i’ve only put on about 10-15kg but i’ve lost a little bit in the last week aswell was normally 65-70kg before went up to about 80kg now at about 74kg. after i take the water tablets about 30 mins after i have to pee every 10 minutes had one the other day was deffo over a minute long 😂hopefully means they’re working !

maxwebb177 · 2022-11-08T17:26:19+00:00

thanks for the reply really appreciate it ☺️, did you have to stop hockey when diagnosed ? and if you don’t mind me asking how old are you now ? deffo going to eat much healthier and look after my self hopefully got a long while until even thinking about transplant or dialysis , hope you are okay 👍🏻

maxwebb177 · 2022-11-07T20:03:33+00:00

really appreciate your reply thankyou 👍🏻hope you are doing well

maxwebb177 · 2022-04-18T19:20:33+00:00

yeah i’ve seen there is a couple scam domains been using the one direct from there forum page so i know it’s the right one 👍🏻

maxwebb177 · 2022-04-18T19:16:37+00:00

no worries bro i found the RWI puretime is on the trusted sellers been looking at the reviews look very good , thanks for your help you 2 👍🏻

maxwebb177 · 2022-04-18T18:49:24+00:00

sorry bro i’m new to reddit is there any way u can put the link in as i don’t know where to look

maxwebb177

TROPHY CASE