Just diagnosed 12/24/15

Just diagnosed 12/24/15

I have had a lot of kidney problems mostly an incredible amount of stones.But even when I'm not passing stones I have severe left flank pain,I'm assuming due to having lupus from what I've read.So does this mean it's shutting down the pain has been there for 3 years now constant.I have joint swelling in ankles feet hand,finger,wrist.It's painful to even type this!The joint swelling just happened after I caught a cold 3 weeks ago.That's how I got diagnosed with lupus.I have had these "flare ups as they are called for years now.I'm on SSDI for parathyroid nodules, that have created a massive amount of stones and repeated surgeries and hospitalizations, osteoarthritis in my back and scoliosis. YEAH I'M A HOT MESS.But I don't understand Lupus at all yet. It so new to me I just got a phone call from my pcp telling me I have moderate Lupus and referred me to DR who specializes in Lupus and rheumatoid arthritis.I don't know what they are going to do and I been on edge since I've been diagnosed.But given all of these horrible symptoms and medical crap the pain everything.I feel blessed because I had a daughter this year !Born 2015 April 24th and perfectly healthy too.If I had known or was on medicine for lupus 2014 I would have never had her and she is my world and she makes this painful life worth living ,smiling, laughing.

26 Replies

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  • Congratulations on your beautiful baby girl. I'm sorry you have to go through this I've been diagnosed with lupus and fibromyalgia and the pain is horrific.I have been dealing with this since 5-24-2013. I love my children so I push pass the pain to live for them. I am going to pray for you and your strength. Enjoy your sweet little Angel

  • Are you OK Denise? Is there anything LUpus Patients Understanding & Support (LUPUS) can do for you?

    With good wishes,

    Ros

  • thank you!Children make it worth it all! Some Lupus victims cant have children I try to remind myself of that when I'm in extreme pain.I will pray for you as well!

  • First, many congratulations on the birth of your daughter. How wonderful! Yes, having a child is the greatest blessing and I am very happy for both of you since it is clear you love her deeply.

    I am somewhat confused about your symptoms and lupus, but you should really discuss all and any symptoms with your own doctor.

    Kidney stones is unrelated to lupus. Those with lupus nephritis will not experience any pain which is why it "used to be serious" because it went undiagnosed. It was only when there was renal failure was there any awareness of kidney involvement.

    This DOES NOT happen today. Blood tests will show kidney function.

    Never make assumptions about your health and never assume it is lupus. Always go to your own doctor as soon as possible.

    It is very understandable that you may feel anxious, depressed, confused about lupus. I hope your lupus specialist (not all rheumatologists are specialists in lupus) is someone who will talk to you and explain what is happening and your treatment plan.

    LUpus Patients Understanding & Support (LUPUS) is here to provide help, support and understanding - including psychological support which we all need. You need to feel able to deal with your medical problems so you can look after your wonderful daughter who needs you. You do not mention whether you have a partner/spouse/family/friends who can help?

    LUpus Patients Understanding & Support (LUPUS) has another website. I have sent you details in a private message.

    Please feel you can contact me here - or via email: roz [at] [lupus-support] [dot] [org] [dot] [uk]

    With good wishes,

    Ros

  • I live with my fiancia and his family have a lot of help/support.Getting married sept 24th this year.We also live next door to my parents lol funny marrying your neighbor ,he always says"I won the girl next door that everyone wanted <3.My problem is, I like to do everything myself its hard to ask for help cause I want to do it all!I get forced help lol.They snatch the baby from me and say"go rest now!Which I am grateful and need.I also have a great urologist that has been my doctor since I was 14.He is like family to me now.I have his cell number and can call him anytime he's a great doctor very well known in his field.I am getting surgery on my right kidney this January sometime.I just don't know much about lupus. I know a lot of my symptoms are from it tho having had it undiagnosed for so long.And after finding out Christmas eve I have it. I read a lot about it.

  • I am glad you have a support network! Congratulations on getting married! Wonderful and exciting time.

    You are not alone about wanting to be independent and "do it all" yourself, BUT you must let others help.

    Having a good urologist who is supportive is excellent too. Talk to him about your worries about your kidneys and lupus. He is the best person to talk to. Lupus nephritis is different from other forms of kidney involvement and is usually painless, which is why, in the past, it was deadly because until the person had renal failure, there were no painful (kidney pain) symptoms.

    The symptoms of lupus nephritis may include high blood pressure, foamy urine, and edema—swelling, usually in the legs, feet, or ankles and less often in the hands or face.

    Kidney problems often develop at the same time or shortly after lupus symptoms appear and can include (notice the absence of kidney pain):

    Symptoms of lupus nephritis include:

    Blood in the urine

    Foamy appearance to urine

    High blood pressure

    Swelling of any area of the body

    Lupus nephritis is diagnosed through urine and blood tests and a kidney biopsy:

    Urinalysis. Urinalysis is testing of a urine sample. The urine sample is collected in a special container in a health care provider’s office or commercial facility and can be tested in the same location or sent to a lab for analysis. For the test, a nurse or technician places a strip of chemically treated paper, called a dipstick, into the urine. Patches on the dipstick change color when blood or protein is present. A high number of red blood cells or high levels of protein in the urine indicate kidney damage.

    Blood test. A blood test involves drawing blood at a health care provider’s office or commercial facility and sending the sample to a lab for analysis. The blood test can show high levels of creatinine, a waste product of normal muscle breakdown excreted by the kidneys, which increases when the kidneys are not functioning well.

    Biopsy. A biopsy is a procedure that involves taking a small piece of kidney tissue for examination with a microscope. The biopsy is performed by a health care provider in a hospital with light sedation and local anesthetic. The health care provider uses imaging techniques such as ultrasound or a computerized tomography scan to guide the biopsy needle into the kidney. The kidney tissue is examined in a lab by a pathologist—a doctor who specializes in diagnosing diseases. The test can confirm a diagnosis of lupus nephritis, determine how far the disease has progressed, and guide treatment.

    Please don't read about lupus on the internet because there is so much bad or out of date information. You need to ensure that what you are reading is accurate. At LUpus Patients Understanding & Support (LUPUS) we only publish reliable medical information and always quote sources to ensure you have the right information. Don't take anything without telling your doctor because some of the so called "natural" or "herbal" products actually can harm you.

    When in January is your operation?

    With good wishes,

    Ros

  • It's not scheduled yet, I am waiting to be squeezed in as a emergency surgery because I'm on ssdi I can have the surgery at anytime my surgeon is available to operate.Its outpatient to blast a 8mm stone on right side.

  • I have already had the 24hr test and all my urine labs come back with protein and blood and have been like that for many years.

  • What does your urologist say?

  • He just says he's never had a patient with this many stones.While you have stones your kidneys bleed and I always have them.He doesn't say much about the protein tho My prenatal doctor did ,she just said it was odd.But never said much about it.My urologist is a teaching doctor as well as a surgeon.I think he has overlooked the protein he only mentions the blood.

  • I am somewhat confused as he is a urologist and ought to know about lupus nephritis. Have you asked him whether you have lupus nephritis?

    In terms of pregnancy, if there is high blood pressure, protein in the urine, swollen ankles, this MIGHT indicate pre-eclampsia, which can be serious in pregnancy.

    Blood tests will show whether your kidneys are working OK.

    Therefore, to ease your mind, I think you need to talk to your urologist about your kidneys.

    You should also talk to your lupus specialist. Ideally, your urologist and lupus specialist ought to communicate with each other so that you have the best possible treatment.

  • I was just diagnosed with lupus 6 days ago.I texted my urologist that evening, Christmas eve and told him.But he said hang in there we will do what we can and figure it all out after the holidays.He's out until after the 1st.And my first time appointment with my Doctor for lupus isn't until FEB 1st.I was diagnosed by my pcp through blood test and a x ray of my hands that are red swollen and hot to the touch.That's why he tested me for lupus and rheumatoid arthritis. Because the red swollen knuckles and he grabbed my hands and felt they were warmer than normal.Turned out he was right.But I have only just found out this less than a week ago so I haven't gotten to see any doctor since then.Just waiting for my appointments.

  • I am so sorry this is happening to you, especially just before Xmas and the New Year.

    I am not a medical doctor and therefore cannot give you any medical advice because you need a lupus specialist who may or may not agree with your PCP who is not a rheumatologist. I can say that lupus is not just diagnosed on xray and blood tests alone. The fact you hands are swollen/red/warm may be an indication of arthritis, but not necessarily SLE.

    Your urologist will be able to see if your kidneys are working OK. I assume they are OK otherwise he would have mentioned to you something about your kidneys. I assume you have had blood tests and scans for your kidney stones.

    I hope the New Year brings you better news.

    With good wishes,

    Ros

  • He did mention that my left kidney which I'm currently passing stones from has something else wrong with it .But he doesn't know what yet.I saw him right before I was diagnosed with lupus.he wants to take a biopsy and remove scar tissue from my left kidney and blast the right stone as its too big to pass.But my PCP doctor isn't going by blood test and the x ray alone.I have these odd red dry patches across my face nose cheeks and its not acne its just big patches they are also on my arms.And my hand,wrist,ankles and feet don't hurt all the time this came on suddenly. I also lost a large amount of hair.And get fatigued out of nowhere to the point where I have to lay down.This same thing happened to me 3 years ago lasted 3 months then went away completely.My hips and spine ,lumbar bone does hurt chronically .That has been diagnosed for years as osteoarthritis through a MRI.

  • I am not suggesting that your diagnosis by your PCP is incorrect. SLE takes time to diagnose as it is not easy. In any event, you need to see a lupus specialist.

    Osteoarthritis is unconnected to lupus as this condition is through wear-and-tear, whereas in lupus, this is caused through chronic inflammation.

    Fatigue and hair loss does occur in lupus, but please see a lupus specialist.

    I hope your urologist can set your mind at ease.

    Wishing you a happy and healthy 2016.

    With good wishes,

    Ros

  • I have parathyroid nodules that's where the stones and osteoarthritis come from.It took doctors over a decade to find that out.Because its also very rare.I'm very knowledgeable about that part of my health issues.I have SSDI for those problems since 2007.I got approved 2012 and had a lot of back payments.It was miserable trying to work wit those problems impossible really.So I'm grateful I have that and medical insurance.The lupus, or maybe lupus is what's new to me.I have an appointment with a lupus and rheumatoid arthritis specialist on feb 1st.That's the soonest they could see me. I also have a crazy amount of weight loss a jean size each week since beginning of dec.Which isn't bothersome to me because I needed to lose 20 pounds after having the baby . I was wondering if that is at all connected because my thyroid test came back as normal.

    I just don't know what to think.I have been so depressed and just out of it since these symptoms started.I dont feel like myself,edgy,cant sleep.In an incredible amount of pain. To walk is just hell.My ankles and feet feel like they are welded together ,like no flexibility .Hands and wrist as well.I feel a bit better in the evening tho.

  • You have had so much to deal with - the physical, medical problems, the worry, anxiety - it is understandable to feel depressed. What is difficult is the not knowing - of which you already have had 10 years to find out about the parathyroid nodules.

    Weight loss can happen in lupus but there can be all sorts of reasons for weight loss, especially if you are not eating - and breast feeding?

    To help soothe your ankles, you can try heat using a "wrap" which heats in a micro-wave and see if this helps. You could also try an anti-inflammatory gel. I would discuss this with your PCP asap and ask for pain relief as it is not right to suffer in this way. You have a baby to look after which will be very difficult if you are in pain and unable to sleep.

    I would see your PCP as you have another month before you even see a specialist.

    I also think you may need to talk to someone as you are having to deal with such a lot - including a new baby and a wedding.

    With good wishes,

    Ros

  • It wont let me make a account on that sire its saying my birthdate is wrong.

  • I replied to you, but I will repeat again:

    The format is: nn-nn-nnnn where n=number.

    You must use the "-_ separator and not "/" or anything else.

    Anymore problems, email me all your details and I will register youmyself: roz [at] [lupus-support] [dot] [org] [dot] [uk]

    Ros

  • I was told because of my autoimmune disease I was more at risk for making both kidney stones and gallstones. Luckily I usually pass my stones and take medication to stop the bile duct stones. Maybe you should see a urologist about your kidney stone and kidney pain

  • I pass many, need surgery twice a year usually to blast them into smaller stones able to pass through.

  • That's too bad:( he had no ideas to help you?

  • He is a surgeon more than a regular urologist.He has been my surgeon for 16 yrs now,so he see's me as a patient in between surgeries as well.He ran all different kinds of test.He says the reason I create so many stones is because my parathyroid nodules/small benign tumors.I saw a endocrinologist for them, but they just keep taking ultra sounds of them and say as long as they do not grow or change shape then they will just keep an eye on them.But they are on my calcium receptors therefore it makes the calcium in your blood much higher than it should be. they take the calcium from your bones,teeth and nails and then the extra calcium filters out through your kidneys and makes a massive amount of stones.They don't know why I have these parathyroid tumors. They just know it's causing me to have osteoarthritis in my hips spine,lumbar bone and kidney stones.They wont remove them because they have not changed in size.I have begged them to take them out but no doctor will.I do not know if Lupus has anything to do with these nodules, because I don't know much about lupus .Just being diagnosed less than a week ago.

  • Hi I understand about the flank pain. I passed my first stone last month. Although it went undiagnosed by the doctor. Me mum has lupus and has had it for 45 years now. She had one kidney removed the doctors said she should have been dead long ago. Now I am suffering from severe arthritis that the doctor is calling calcified tendinitis. hair lost, facial scarring, and facial dents around the nose. I have not been diagnosed with lupus. I'm so happy for you that you had a beautiful, bouncing bundle of joy. Be well.

  • Yes well the doctor told me a lot of people go undiagnosed because their number aren't high enough to say for sure.They call them borderline but it doesn't mean they dont have it.Too me I'm on SSI and have been since 1012 so having it on paper wouldnt matter my numbers were high and I have done the blood work they send out to find out exactly what type I have I still do not know.Having these symptoms suck tho whether you are labeled as having the illness or not.

  • Thanks that's true.

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