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Finally a diagnosis

After being in hospital for months and after 2.5 years of being neglected by my doctor I have finally found out why my legs and stomach and most of my body was swollen and bloated! I have a very rare kidney disease there is protein leaking from my kidney, the swelling and bloating was caused by salt!! Now I’m on a very low salt diet and only allowed a litre of fluid a day, the hospital drained nearly 4 stone of fluid and the rest is being done slowly at home with me taking 5 water tablets a day. My legs have massively gone done but I still have a bit of fluid left in them and they are still extremely painful. I was diagnosed last year by my doctor with lymphedema but after being in hospital the renal specialist and lymphedema specialist told me it’s not lymphedema it was odema caused by the kidney disease. I’ve been so poorly for a year and I’m so thankful I changed my GP with the new one sending me to a renal specialist. My right leg has the red/purple scaring where I’ve had blisters and water leaking from them but I’m hoping in time that will fade and it goes numb if it’s in the same position for more than 5 minuets. I’m suffering mentally at the moment knowing this could of been caught 2 years ago and my life has completely changed, I spent a year house bound and on the sofa unable to move, my body has changed but I’m so thankful I’ve been diagnosed and now on the road to recovery 😊

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Hi again , somehow I didn't see all of your post when I replied a few minutes ago , I'm so sorry as I see now you've really had a tough time. Please excuse my first reply as I wasn't aware of all the facts. You must be feeling so relieved at getting the correct diagnosis and losing the excess odema. I just want to say best wishes with a speedy recovery and all the best for the future.

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Hi I'm so glad they've eventually managed to get you sorted, it gives me hope x

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Hi Little-me81-5474.

Thanks for letting all of us know about this very difficult situation you've endured. You've given me the idea that I need to follow up with a kidney specialist soon.

I've had chronic kidney disease for eleven years with function decreasing the older I get. I noticed a recent report showed very high protein in my 24-hour creatinine clearance test, and asked my primary care phsician about it. She made a referral to a specialist some weeks ago, but they haven't called me yet. I will follow up right away.

One year ago my bladder was removed due to cancer. With it they took out 28 lymph nodes. Swelling began in the left leg, then the abdomen, then in May the right leg. All are very swollen these days to the point that I am rarely out of the house. Of course, we figured the lymphedema came from the radical surgery. But with the high protein, maybe the kidneys are at least partially responsible. I don't use much salt, but will begin to track it and eliminate what I can. And get answers from a kidney doctor.

So your post has been a good deed done for me. It's been Thanksgiving time here in the US. Good time for me to send blessings on you for a complete recovery and rid of that pain!

Mary Kay

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Hi Mary, sorry you’ve been through a lot but yes definitely double check with a kidney specialist, I have very high protein count in my urine too, I never in a million years thought I’d be diagnosed with a very kidney disease but thank god the symptoms were there for the specialist to act on it and do the correct tests. My specialist hasn’t had to treat anyone with this disease that I have so they are having to do their research on it and hopefully find someone in the country that’s got the same disease to see what medication they have been using. I’m to have a very low potassium diet too, the salt causes me to bloat everywhere including eyelids face etc

My doctor never in 2 years sent me for my kidneys checked even tho I was showing all signs of early kidney problems so at the moment I’m just at an angry stage, I want to snap out of this but it’s so hard because my life has been so effected, I’m now registered disabled I had to leave my job, I couldn’t be a mother a partner a friend for a year because I was so poorly and I had limited movement, I was extremely embarrassed and still am of my body so I cut off all communication with friends apart from 2! That’s been the hardest thing because I was such a bubbly 35 year old then life took a bad turn, but slowly everyday it’s gettiny a little easier so I’m taking it day by day. I do hope your feeling better and you can have some more answers 🙏

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Thank you for your very nice reply and prayers. I've followed up and will see a nephrologist soon I hope. And here's some prayers for you that the edema continues to lessen and you can get back to being yourself again! ...Wiser for the wear. I sure do hope you can overcome the swelling now you are in good hands of a specialist.

Low potassium is part of what I do for my chronic kidney disease. And low salt now with the lymphedema. I'm trying to get back with the dietitian who helped me with a CKD diet eleven years ago, and have her give me the same diet again. I do know that I can't go over about 46 grams of protein. Maybe that will help with the protein in urine issue. We'll see. Blessings for the holidays! Mary Kay

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Hello Little-me81-5474, I am so pleased to hear that you have had an accurate diagnosis and that you are on the road to recovery. I truly wish you all the best and god willing let your recovery be quick as this will enable you to get your life back. Good luck.x

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Hi Little-me.

It sounds as though you've been to Hell and back with what you've been going through, but I'm so glad they've eventually found the root of your problem and can begin doing something about it? From hereon, your only way can be up...? 👍

However. whilst reading your post - and others along a similar vein - I couldn't help but notice what a strong connection there is between LD and our blood and kidneys? In particular, the trace elements they find in our blood, and kidney disease?

I've recently had blood tests to check my thyroid, including further tests (which should be done regularly when we're taking Levothyroxine?) to check for other things - amongst which are the trace elements? My tests have shown that I have raised potassium levels, so the test is being repeated (in case the cause is a one-off 'hiccup'?) before further tests will have to be done to assess any kidney disease? All of my symptoms seem to be ringing bells...?

I thank the Gods that my symptoms have been spotted before I've reached your levels of suffering, albeit accidentally by one attentive doctor, with whom I would like to shake hands!

Bless you for sharing, and for a speedy recovery. x

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