[spinaspirit]

I was diagnosed with Nephrotic Syndrome 7 months ago, I have had all the regular sort of symptoms such as frothy urine, water retention and tiredness but now I have severe lathergy. My 24 urine test showed that I was loosing nearly 8g of protien, so I guess quite high, but no one seems to know why the severe lathergy. My specialist said that he's never seen anyone present with it so therefore he believes that it is not a symptom of my Kidney disease and my GP says that she thinks it is a contributing factor to the Kidney disease and that I should discuss it with my Specialist. Some day's my muscles feel like led and I am so tired I am scared to drive my car. I am wondering if anyone has had this severe lathergy symptom because at the moment I feel like I have hit a brick wall and don't seem to be able to get any answers or solution to this problem. Thanks

[sruthan70]

Hi, I know how you feel, I have the same feeling of total exhaustion a lot of the time and have complained to my doctor several times but they do not say it is caused by the nephrotic syndrom?????I have had my condition for most of my life I am 39 now.When the tiredness hits I have to lie down or else I would just fall asleep where I was.I cant stay awake.I wish someone could give an answer to this as I feel it is connected to the condition.

[spinaspirit]

I've just changed specialists and he has said that it is perfectly understandable to feel this lathargic, especially considering I am looking 9g of protien in a 24 hr period and I have anemia. I really was starting to feel that I was going mad and the one specialist implied that it was in my head. I do however feel that there is more to this lathergy than what has been explained to me and I think there is a strong connection to Nephrotic syndrome and the lathergy experienced.

May I ask if you are still working? I have recently had to give my job up and now stay at home as I just was unable to hold down a full time job due to having to manage this disease and the lathergy that has come with it. I find it really frustrating.

[sruthan70]

Hi, I was admitted to hospital last week, usual sort of thing generally not well, and totally exhausted, the anemia must be connected with the condition also as I have the same problem trying to keep my iron levels up as well as everything else. I am still working but it is part time work, its all I would be able for, with the tiredness and infections and all. I dont talk about my condition much to family or friends but it is hard to keep going and do the day to day things.

[spinaspirit]

Hi, how did you handle your diagnosis. I had that whole feeling of shock and disbelief and then did the "how on earth did I get this" over a year on now I have come to terms with the disease and the management of it. I have 98% Kideny Function which is amazing specialists as they say with a protien loss of now over 9g they can't understand how my kidney's are holding up. I really believe that it is good to talk about it but it's hard as family and friends can't truly understand what you are going through as much as they try. I have a friend who has complete renal failure, not due to nephrotic syndrome but due to a serious complicaiton as she has been the greatest help and support but I came onto this site to be able to find someone I could talk to about the day to day and hopefully someone who could to talk to me.

My specialist has said that anemia does go hand in hand with this disease which makes it's difficult as you feel low from the loss of protien and then when you add in low iron levels it really takes it's toll. I have now learnt how to manage my symptoms which has probably been the most challenging for me as I have always been a very active person but I rest on the bad days and do the things I want on the good days. My husband and 2 teenage boys make it possible by helping with household duties so that on the good days I am not weighed down with house chores and can go and do the things I love to do.

I have started my own business along with my Mum which also allows me to work and also manage the disease which has been great as I love to work.

Please tell me about your disease and what you are going through. If you are not comfortable on this site I am happy to give you my email address.