1st appt with nephrologist and question ... - Early CKD Support

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1st appt with nephrologist and question on diagnostic Tests - Repost

suemacke profile image
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I got no replies so I will try this again under a new title: I've been following postings for a few months but haven't posted because I have no ckd official diagnosis. I had my first appointment with a nephrologist who said I don't have any of the common causes for kidney damage so he sent me for more tests to rule out underlying issues. Along with the 24-hr urine collection for creatinine & protein, ultrasound, he added serum free light chains/protein electrophoresis and calcium to the blood work and/or urine collection. From those more experienced with these tests, I'm wondering if these are part of the regular testing for kidney disease and if you know what they are for? Google searching turns up multiple myeloma which does concern me -- though I understand testing is to rule things out... still it would be nice to hear it's just normal testing since I don't go back for two months. So any additional info you have would be helpful.

About me: I'm 48 year-old female with an eGFR of 53, hematuria, creatinine 1.2, low to normal blood pressure, several autoimmune diseases (celiac, pernicious anemia, intermittent ovarian failure). I suspect the kidney damage is related to my autoimmune issues since they've caused secondary issues well before my time, including being diagnosed with osteoporosis and going into menopause in my late 30s. Thanks in advance for you help.

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Bet117 profile image
Bet117

Dear Suemacke,

You are not alone and none of this is easy! Breathe and go one day at a time.

Each nephrologist has their own list of tests. The 24 hour urine catch, although annoying, was done by my GP last year after they realized my protein spilling wasn't a stress fluke.

I had a CT, Cystoscopy and eventually a biopsy before they came to my diagnosis of Membraneous Nephropathy which is also autoimmune. Every nephrologist has their own set of diagnostics and way of looking at things.

They monitor blood and urine every three months at least.

I am not an expert, but am told that one autoimmune disorder can yield another. My Hashimotos Thyroid lead to Osteoporosis, both in my family. To my knowledge, I am the only one with a kidney disorder.

Call your doctor and express your concern about this being multiple myeloma and ask what they suspect this is. Remember, you are paying them for your care and to answer questions. There are many autoimmune kidney disorders which are a possibility so don't jump the gun on the mm until you are told this is the diagnosis.

I tell myself every day that this is a process, not a ride on a go cart, but a process.

In the meantime, watch your diet; low sodium (1500-2000mg a day) no canned soups or processed meats like cold cuts, bacon, etc. No red meats. Minimize protein.

Lots of fresh or fresh frozen vegetables and fruits.. Dairy to a minimal. Drink more water and avoid over kill on soda to none if possible. You know the drill from the celiac disease.

Post again and let me know how you are doing!

Wonderful people on this site who will be there on the other side of the computer!

Hope to hear from you, soon!

Bet

suemacke profile image
suemacke in reply to Bet117

Bet - Thank you so much for your reply and sharing your own experience with me. I'll definitely check in when I get more answers

Bet117 profile image
Bet117 in reply to suemacke

Sue,

No thanks ever needed. Stay strong and think positive.

Message me at any time!

Bet :)

curleytop1 profile image
curleytop1

Hello suemacke, So glad Bet117 was able to help you! I think the reason no-one replied to you first time around is that most of us lack the right knowledge to do this (I certainly come into this category, although I do have allergies they are not so severe as yours and I can keep them at bay without medication, except for prescribed eye-drops). Best wishes, hope you have a better result than you are fearing - Curleytop1.

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