Can you have a kidney problem that doesn’t show in an ultrasound or blood tests?

[Paul_Mac]

Hi, my names Paul, I’m 39 and find myself between a rock and a hard place.

(apologies that this write up may be a little long & all over the place, but I hope you can read and make sense of what I’m trying to explain. I experience brain fog and a lot of confusion, so trying to write this has proved difficult for me and taken many weeks.)

My story spans many many years, but I will focus mostly on the past few years...

After many years of having issues when taking medication, supplements mainly breathing, twitching, headaches, insomnia, fatigue, low mood etc. The problems got worse over 3 years ago when I was prescribed and taking some medication Sertraline. Despite reporting issues from the get go, i was told to keep taking them, as all medications come with side effects... Anyway a few days later I got chest pain with racing heart which normalised after a few minutes... 2 hours later a red rash like large patches of sun burn appeared around my upper body and neck.

Over the coming months I started to react to things on my skin, then over time more and more things both on my skin and what I ate... Then started experiencing various pain, hair loss including facial hair & legs.

So with my skin it started off with shampoos/body washes, then as time went on things like aftershaves/essential oils and then to almost everything with chemicals especially scented ones. The only things I can now safely use on my skin are things like black soap that are made with Shea Butter, coconut oil, olive oil etc... I was using Calomine lotion almost daily to help with the red rash, but realised it wasn’t good to do so.

In terms of foods, I noticed I was having issues with more and more of them to point the only things I know I can now eat that don’t bother me as much is... Turkey, Eggs, Carrots, Green Beans, Spinach, White Potato, Brown Rice, Almonds, Almond Milk and filtered water. My options are very very limited. I’ve gone from being 11 stone 5 ibs, lifting weights to 9 stone 3 ibs in the last 3 years. I can barely eat anything, I’m finding it hard to maintain my weight, can’t eat when I go out etc.

I have issues with most things I consume and can’t take/have any medications, supplements, foods/drinks that contain additives like preservatives, all fruits and most vegetables, all acidic foods, but also a lot of non acidic foods like melons, bell peppers cucumber (I wake up feeling like I’ve stopped breathing if I eat melons and cucumber, it’s crazy!). Even Herbs, salt and pepper are off the menu.

I believed the issue wasn’t with the above things, but something wrong within my body, which I believed to be my right kidney some kind of dysfunction (All of the below symptoms would suggest it to be my kidney, but I just don’t know?) and whatever it is that’s causing it now means my body can’t handle having the above. Otherwise I get the following...

I get amongst other things, the pain around where my right kidney is worsens, lower back muscle that goes down the back of my right thigh, calf, ankle, up around my liver into my neck, round the back into the base of my skull and around the right side of my head/eye. I get Joint/back/spine/muscle pain/stiffness/spasms/clicking. Blood shot eyes, chronic fatigue, insomnia, brain fog, confusion, dizziness, headaches, mood/anxiety/depression like symptoms, ectopic heartbeat, feeling like I’m over heating/dehydrated, sore eyes with blared vision, enlarged pupils, sensitivity to most foods, skin reactions, dry skin, sometimes slightly swollen ankles (More recently I’ve noticed an ammonia like smell, which basically smells like cat urine coming from my armpits and at times, brown strong smelling urine).

All of this could be linked to a possible kidney problem (something I’ve recently come to my own conclusion to August 2019, because no one is really listening or trying to help my situation), but despite this I have found it difficult to get to the right place to be helped. My Alt was over 250 (it’s now up and down between 60 to 100), so I was referred to a liver specialist September 2018, the first one seen in November 2018 was a surgeon (the wrong consultant) who wanted to just discharge me, I kicked up a fuss and he referred me to a gastroenterologist, who I seen on 5th January 2019 who also wouldn’t listen and was dismissing everything I was saying, before I’d even finished saying it (at the the time of seeing him I had swelling around my kidney/liver area).

I tried to explain this was caused/made worse by the medication a few years ago, that I believed everything I was experiencing was connected, that was getting worse over time. The replies were, no it’s not to everything and suggested it would get better by itself and tried to suggest that most of it was a result of depression/anxiety! He’s not the first to suggest it, that and it’s your age the heat or whatever. it’s all I’ve had the past 3 years. I was even advised to go for hypnosis, because I’d be a good candidate if my mind was powerful enough to create all this... You get diagnosed with depression and it’s all they flipping see! Do the pics I’ve included suggest they’re right!?

There was no open dialogue, discussion nothing. Just told whatever’s wrong will likely correct itself... This has been going on for over 3 years & beyond getting worse and I’m told it’ll likely just correct itself or it’s in my head. (I’m shaking my head and lost for words with how writing this is making me feel!).

It doesn’t help that apparently all the tests other than the ALT were normal (I haven’t seen them personally, but I’m going to request them.) bloods and Ultrasound scan. I just don’t know, How can I be experiencing all this and not be able to get answers!?

I was just left to see how things go for a year, before going back... I called up several weeks ago to see when it would be and was told July! The person I spoke to said she’d try and get one sooner... The next day would you believe. She was the first to acknowledge there was a problem, but with my liver, but didn’t know what. She was reluctant to do a biopsy and saad there was a few tests that I apparently hadn’t had. I asked her if it could be my right kidney, because of all the symptoms I’m having, but she said no it was my liver, but how could she, when she doesn’t even know what the cause is? I also recently read that if ALT is raised with no other liver markers or whatever that it most likely isn’t the liver, but the possible cause could be the KIDNEY, muscle or skeletal.

Last September after yet another GP appointment, I requested to be referred to a kidney specialist, which my GP did, but it was rejected, my life’s been and continues to be a living hell. I’m just stuck in limbo not getting the answers or help I need, my life passing me by... My life is limited, because of this problem, I’m in pain everyday with only heat for relief and self acupuncture for relief (I’m thinking of buying a vibrating massage gun or plate as they’re meant to be good for relaxing muscles amongst other benefits)

I set up a GoFundMe Page last September in the hope to raise funds to see a private consultant and have some tests done, as I was told by a consultant a couple of years ago that the NHS tests are not always accurate, reliable or able to get the whole picture and that the private hospital would have access to more advanced testing equipment and test for things the NHS might not.

I’d previously used most of what little savings I had on private physio and a chiropractor for the muscle/joint pain thinking that’s what I needed (I had seen a physio on the NHS, but they didn’t want to do any hands on treatment, just showed me some stretches to do at home). I don’t really have a supportive family or social group to help get the donations going or to share the page, so i didn’t raise much. I’m currently trying to sell some things to pay for tests.

I really believe this can be diagnosed and possibly fixed (hopefully before it gets worse or is the death of me) if only I can find the right tests or consultant who is the best in there field. Can anyone please shed any light on my situation, any suggestions in terms of of conditions it could be it tests I should/could ask for on the NHS, could private testing equipment shed some light where the NHS might not?

I don’t drink or smoke, I’ve done so much research and tried many natural things like various different vegetable and herbs, I try to exercise as much as possible to try and help fix my situation. Nothing has really helped, but usually makes all of my symptoms worse. Avoiding everything lessens my symptoms.

I appreciate everyone taking the time to read and reply to this, I apologise for the length, I’ve left out a lot, but wanted to cover as much as possible to try and as much info.

Thanks

Paul

I was hoping to be able to add more than 1 pic to show the difference in my appearance over the past few years.

[orangecity41 NKF Ambassador]

Sorry to hear of all your medical problems. We are not able to diagnose here. Your Doctor should be able to diagnose if you have Chronic Kidney from your eGFR and other related blood work. If there has not been an eGFR test run then maybe request one.

[Paul_Mac in reply to orangecity41]

Thanks for replying. I know you won’t be able to diagnose, but do you know if it’s possible to have a kidney condition that doesn’t necessarily show up in conventional tests?

[Hidden in reply to Paul_Mac]

It's not likely that a kidney problem wouldn't show up in your bloodwork or a urine test - not after 3 years.

Brown urine can certainly be present in liver disease. Rash is also common in liver disease .

Have you ever been tested for hepatitis C? It's a long shot but it sometimes goes undiagnosed. You might also want to think about fibromyalgia which could be a concurrent problem.

It took me 40 years to be correctly diagnosed with the immune disorder that I have. Yes, doctors kept suggesting that I had a mental disorder. I went to therapists who concluded I wasn't making up my symptoms and then the doctor's wouldn't believe the therapist they'd sent me to.

In fact, I stopped even mentioning my joint issues whenever I saw a physician. Fortunately a sharp-eyed primary care doctor noticed I had some problems with my joints and finally sent me to another doctor who diagnosed my illness correctly.

Definitely see the doctor and pursue the liver testing.

I totally understand your frustration. Hang in there and good luck.

[Paul_Mac in reply to Hidden]

I’ve been told I’ve had every test Hep C being one of them.

[Celtic]

Sorry to hear of all your suffering, Paul. As orange city has advised, this really is a subject for the doctors. It could be anything from an autoimmune/vascular condition affecting the liver to goodness knows what. I suggest either a good consultant rheumatologist or vascular consultant as your first port of call - you should not be left to suffer like this. All the very best.

[Paul_Mac in reply to Celtic]

Thanks for replying... I’m not getting anywhere with doctors though unfortunately, but I’ll try to get a referral to one or both of your suggestions. Thanks.

[Bassetmommer NKF Ambassador]

Hi Paul Mac

Sorry for your pain. The first thing is to get a hold of all your labs and put them on a chart to see how they plot out. For CKD, you need to look for GFR and creatinine mostly. Put it down on paper for at least the last couple of years. Labs over time are the way to discover patterns and trends and to see what really is going on.

Write down your symptoms, when and how often also. It can be difficult to remember things when you are speaking with a doctor and you might forget something that is important.

Track the foods you eat. Write your questions down when you see the next doctor.

There is a lot going on that you are reporting. The doctors may be having hard time pinning down what your situation is with all that is going on.

Did you tell anyone about the dark urine? Your symptoms could be so many things. CKD is pretty evident by testing blood and urine. It is common that a nephrologist will only see patients with stage 3 b or 4. You need to find out from the labs if there are markers for CKD. Otherwise, you probably won't get in to see a nephrologist. After reading again your post, has anyone checked you for a UTI?

[Paul_Mac in reply to Bassetmommer]

Thanks for replying....

I’ve just requested all lab results, but won’t my GP & consultants have looked for any patterns and trends?

I’ve already written everything down, passed it on to my GP and taken it to my consultant appointments, they just usually glance at it and when I try to elaborate they become dismissive and don’t want to know, which is part of the problem if they don’t listen or want to know everything that I’m experiencing and just focus on blood tests or my mental health then I’m never going to get to the bottom of it.

I have mentioned the dark urine, but it’s not always present and less so now i try to avoid everything that makes everything worse (I haven’t added anything back into my my diet since mid December). Even my hair grows back during times of avoidance.

I have had a UTI.

Thanks.

[TaffyTwoshoes27 in reply to Paul_Mac]

Briefly, time and time again, GP’s and PCP’s are not well-trained to spot kidney issues or “trends”. My Internist overlooked my low, probably CKD4 GFR of 23 for 5 months and only diagnosed high blood pressure. It took a Nephrologist to recognize I was suffering from Chronic Kidney Disease, Stage 4. It is not always true that people suffering with kidney failure will experience pain in their back near kidneys.

[Marvin8]

Paul, you really need to get your cystatin-c tested to confirm kidney status and prognosis. If kidney disease fails to show up in creatinine, cystatin-c, and an ultrasound, the only remaining diagnostic tests are a kidney biopsy and direct kidney clearance using inulin or iohexol. It would certainly be great to hear that your kidneys are fine and that maybe it's something else more amenable to treatment. Best of luck.

[Paul_Mac in reply to Marvin8]

Thanks for replying... I’ve already had an ultrasound that I was told looked fine, I’ll try and get a hold of the tests I’ve had and request that one if it’s not been done. I took inulin to try and help me sleep a few years ago and I’m guessing whatever’s going on in my body resulted in and like almost everything else it wiping me out for over a week.

[Cocosa]

When I read your post, I came to think about the Facebook group Biosynergy Health run by Mark Hathaway. He’s doing world wide dry blood, metabolic and body chemistry testing, profiling and rebalancing. I know this is a kidney group, but maybe you have do dig deeper and wider to find a solution to your issues. I feel really sorry for you and hope you’ll be able to find some health improvements.

[Paul_Mac in reply to Cocosa]

I’ll check the group out, thanks.

[lowraind]

I tend to agree with zencat. When my pain became unbearable my primary referred me to a pain specialist, who referred me to a rheumatologist, along with a physical therapist. The rheumatologist referred me to an orthopedic surgeon and to an occupational therapist. After all of that, I was diagnosed with lupus, and after a lot of research have found that many of the autoimmune diseases resemble each other.

Keep searching, someone will give you the answer.

[Paul_Mac in reply to lowraind]

Hopefully... 🤞🏻

[Chris1974 in reply to lowraind]

Agreed.

When I first read this the first thing that comes to mind is autoimmune issues and possibly side effects from medications. Everything Paul stated in his initial post matches a toxicity to specific antibiotics or other strong medications. I have been going through his exact issues and was for sure it was my kidneys and after 10 different specialists including some of the best doctors in the state of California they finally admitted autoimmune/CNS damage that may be for life due to toxicity of certain medications I took in 2016. Being in the medical field I suspected a kidney issue but I was wrong and the hundreds of labs done over 4 years were always normal. Endoscopy, colonoscopy, ultrasound, CT and MRIs all were normal. Finally in December of 2019 an ER doctor found something and said my gfr was 56 and it had never been below 84 for decades. My creatinine was high and he said it was toxicity from another antibiotic my primary care doc started me on. All from possible prostate issues. So stopped that immediately. My numbers went back to normal after a week. I still have right flank pain and have had since 2016 and my diagnosis? Muscle skeletal damage caused by antibiotic toxicity. Crazy. I am getting a lot better and changed to a kidney friendly diet anyway after speaking with my nephrologist. Lots of fiber, the strongest probiotic, walking a lot and eating right has made the last 4 weeks of my life better than the previous 4 years. I am active on the toxicity blogs and have helped dozens of folks that have had their lives and kidneys ruined by the Floroquinolone family of antibiotics. They cause permanent nerve damage along with a list of 30+ other ailments (All of the ones you stated are included). It also causes acute interstitial nephritis.

All I am saying is keep an open mind and it absolutely can be side effects from routine medications causing you issues.

You need to either change providers or tell them straight up something is not right and force the issue. You know your body better than anyone. Don't let anyone try and tell you otherwise.

Let us know what you decide and the outcome.

[Paul_Mac in reply to Chris1974]

I’ve certainly got an open mind and had theories of my own regards what you’ve said above. Sertraline can cause autoimmune disorders. I was also given antibiotics 2 to 3 times a year for 3 years (2013 to 2015) for a prostate problem I likely didn’t even have... I believe they contributed to my current situation by reducing my gut bacteria which know has a massive impact in almost everything in our body from sleep, mood and vital organs like liver/kidneys.

I’ve tried several probiotics over the years and all would cause me to find it hard to breath and cough up a lot of mucus. I even spent over £100 ($130) on a powder probiotic without any fillers that you keep in the fridge and the same thing happened. I then tried making my own kefir and had to stop using it, I’m guessing because of the acidity, the pain would get worse in my muscles, joints and kidney area, bloodshot eyes and insomnia. I then tried store bought kefir hoping it would be less acidic, but bad the same issues get worse.

I’m doing intermittent fasting at the moment which is meant to have great benefit to your gut but I do suspect I need to reintroduce some strains of bacteria. Apparently those who have pets have the strongest guts, because the good bacteria are all around us including on animals (maybe I should get one 😅).

I’ve just ordered a vibrating gun to use on my muscles and plan to buy a vibrating plate in the future as they’re meant to have many benefits (which I’m going to take with a pinch of salt until I’ve tried them) that include helping detoxification by helping your lymphatic system, improving/increasing blood flow, strengthening bones, improving fitness without much effect (especially helpful if like me you have chronic fatigue) apparently 15 mins on one equals 60 mins of exercise. Although I’ll likely start with a minute or two then increase accordingly.

Im going to hope the vibrating gun/plate help eliminate the muscle pain, improve fitness and in turn promote my bodies natural healing powers and Im not adding anything back into my diet for several months or longer whilst I do this in the hope whatever is going on will start to heal itself.

I think posting on here has helped me get some clarity in that I need to take the bull by the horns and try heal myself doing the things I mentioned above, whilst also continuing on with my complaint.

I’ll keep an eye out in my blood test results from the past 4 years when I get them for the things you mentioned and I’m glad you got answers for your problem.

Thanks.

[Chris1974 in reply to Paul_Mac]

You either used Bactrim or Cipro for your prostate issues if it's bacterial. Both of those medications will cause temporary and permanent damage to the mitochondria in your blood and it also changes your DNA along with a slew of other issues. Not for everyone though. We call this being "floxed". I know folks that took a weeks worth of Cipro and have been sick for over 10 years and it's considered permanent at this time for her. There are inside things I know but can't say because I worked in the military for decades in the medical field. But let's just say certain antibiotics will damage many organs for some folks and they are responsible for a lot of things the general public/civilians just don't know.

Thanks for the response and I hope we all get better.

[horsie63 in reply to Chris1974]

I was an ultra athlete and knew of cipro's evilness and refused it whenever prescribed.

[Sammi_n_Munk]

Hello Paul. Welcome to the forum. Not sure if you know this, but we can’t actually diagnose here, but we can offer advice (some of the soundest advice I’ve ever received in life has come from the many people here), and we can offer you support to the best of our ability.

Well, I’m going to start off by telling you something you already know; you’re getting getting treated like crap by your medical team! I was disgusted while I was reading your post and hearing about all of this dismissal. They don’t seem to be taking your issues seriously, and this is absolutely unacceptable! What I would do is go into your doctor’s office and lay down the law. They are getting paid when you are in their office trying to get help for your deteriorating situation. Perhaps you need to remind them of this. Just because you suffer from depression and / or anxiety does not give them the right to chalk all your current issues up to that. They should be doing what they’re getting paid for, and addressing these issues that are virtually making your life a growing misery.

If the medication you are taking is creating this much distress for you, they should be suggesting something different. Many of the skin issues you described sound like a significant allergic reaction. And I would imagine that your gastrointestinal issues also may be related to that as well. I think, when our bodies are trying to reject something (chemicals) that are doing harm, these are the ways in which they inform us. Your doctor should be taking this into account and not just fluff you off like that. You may want to mention to her / him that perhaps if they followed a better code of ethics as the medical professionals that they are, and treated you with the respect you deserve as their patient, maybe your anxiety levels would have a chance to improve.

I’m truly sorry that you’re going through such an awful experience. I suppose you can probably guess from my somewhat angry response that I too, have been down a similar path as yours. But it just irks me to no end how arrogant and inconsiderate some physicians can be.

Honestly, what I would do, is demand the tests you need. Much of what you described could be only the result of the side effects, yes, but if it isn’t, you need to be aware of it so you can begin on the right track. If your urine is dark, and you have pain in your back, and you’ve been extremely fatigued and in a fog, with dark moods occasionally, these can all be signs of chronic kidney disease (CKD). And if this is actually the case, there are changes that you will need to make with regard to diet, exercise and sleep if you expect to slow the progression of it and improve. But you won’t be able to do any of these things without the proper help and guidance from your doctor. They need to start listening to you.

I wonder if you tried to approach one of your municipal government officials. Could they offer any help to you? Or continue your online research and find another doctor who knows how to listen to a patient and lend some respect, regard and support the way they should be doing. You shouldn’t be put on their “pay no mind” list just because of anxiety issues. This is wrong. Also start demanding copies of your blood lab results. You can take these with you to other doctors you find online.

In the meantime, if you believe that these issues are in fact being caused by possible kidney trouble, try going to DaVita.com for help with kidney-friendly food and beverage lists and recipes. It can be pretty helpful. Also, try to lower your protein intake, and limit foods that are high in sodium, potassium and phosphorus. Even if you feel tired and a little worn out, try to get in a little daily exercise (even just a twenty or thirty minute walk can help). The oxygen you get from it could help to energize you. Sometimes, this can make all the difference. And to help with insomnia, try drinking some chamomile tea, or taking melatonin supplements. The people here often swear by it. And drink water. Ask your doctor how much is the proper amount for you. Sometimes amounts of water in a day can differ for people with CKD depending on what stage they are in.

Also, keep away from NSAID pain relievers (even over-the-counter ones, like Advil, Motrin and Aleve) these are bad for the kidneys. For your chronic pain issues try Tylenol instead. But then, be careful because Tylenol gets filtered by the liver. If you do have liver issues, this may not be good. This is something your doctor should be assisting you with. If they know that your liver is not doing well, they should be directing you better.

As I said before, try appealing to a government figure, or search for another physician online. There is an answer to this issue, Paul. It’s just a matter of finding the right person who cares enough to do right by you. Please do keep us posted on any progress you make. We are always here for you, don’t ever forget that. We’re kind of like a little family here. Lol! I look forward to hearing some good news. I’ll be praying for you, dear. Keep your chin up. All my best to you. God bless. 🙏😊👍

[Paul_Mac in reply to Sammi_n_Munk]

I’ve tried laying down the law... I had a meeting with the head GP & practice manager and got nowhere with them. The GP said to me “well what do you want me to do?”

I’m not taking any medication anymore. I can’t take them, supplements, foods with additives or most foods especially acidic ones. I took half a b12 vitamin about 2.5 years ago and was awake for almost 3 days.

I believe whatever’s wrong is resulting in my body absorbing too much of certain nutrients causing all my symptoms and same problem means my body can’t detox chemicals resulting in a build up in my body that cause the skin reactions. I also believe my depression and anxiety are a direct result of the issue in my body, because of my body absorbing too much or not being able to detox.

I use a rebounder, some light wights and do dips/push ups when I can, but I can not take any of the things you suggest, because of what’s going on I feel extremely dehydrated just from adding a small amount of salt to food. All I drink is water and foods I can eat that I mentioned above are so limited that I can not limit them anymore than I have.

I’ve been told I’ve had some tests to rule our a kidney problem, despite everything pointing to my right kidney being the problem. I think it’s some sort of dysfunction.

I contacted my local MP who didn’t want to help, so I’m complaining to the ombudsman.

There are many doctors that are not very good at what they do, but are employed due to there being a need for them.

I feel this will be the death of me, one way or another and sooner rather than later... I’m just lost and tired of it all.

[Sammi_n_Munk in reply to Paul_Mac]

I hear ya. You’re doing a good thing going to the ombudsman. I know that there is a need for doctors, but really, we shouldn’t be having to enlist janitors and gardeners off the street to come and provide medical care to patients! Lol! Asking you what you want them to do is not a question that a medical professional should be asking a patient. They should already know what testing needs to be conducted based on your symptoms. This is ridiculous! I mean honestly, what good is it doing us as patients, that they are getting paid for, but not actually providing, the care to us that is required? This is what frustrates me.

With regard to the acidic foods, have you tried taking some baking soda in a glass of water? I know that sodium bicarbonate can decrease acid in one’s system and it shouldn’t be harmful to you at all. Also, I know you mentioned that you drink water, but do you think it may be possible that you’re not drinking enough? Sometimes dehydration and starvation can cause people extra stress, hence also causing hair loss and insomnia. Drinking will help flush your body of toxins. I hope this works for you.

Please do keep us posted. Wishing you all the best and God bless. 😊👍

[boon1]

Have you discussed chest,abdomen and kidney ultrasound with your GP or maybe some other imaging tests? That might answer some questions or atleast eliminate some possibilities.

[Paul_Mac in reply to boon1]

Thanks for replying... I had an ultrasound last year that I was told looked fine.

[Sammi_n_Munk]

Hello again Paul. Just wanted to tell you, I researched online the side effects of Sertraline, and almost everything you described above that you’re suffering from, right down to the itching and rash / hives, etc., are all part of the many nasty side effects of this drug, even the breathing issues you mentioned. I would be demanding a different drug with very little evil side effects, if possible. If you get a chance to, check out the Healthline website, and review the side effects of this drug. They sound pretty awful.

[Paul_Mac in reply to Sammi_n_Munk]

Thanks for replying... I was on sertraline for about 12 weeks, but I haven’t taken any medications for almost 3 years now, my body can not handle them like almost everything else.

[Sammi_n_Munk in reply to Paul_Mac]

I’m glad to hear that you’re off of the meds. I’ve also tried to do the same, and I was able to manage that way for awhile, but unfortunately, I’ve had to begin taking my diuretics again because of fluid retention due to my CKD.

Paul, do you think it’s possible that your body is just going through a readjustment phase (almost like a cleansing) after some of the medication you used to take? I only suggest this because once I had to give up most of my medications because of similar issues that you described, I also had gastrointestinal issues that followed as well. Also, you mentioned in your previous post that you’re having bone and joint issues. I know that some forms of arthritis (such as psoriatic and rheumatoid arthritis) can also be accompanied by gastrointestinal, and eye issues (both of which I also suffer from).

Believe me, I understand what you’re going through, and I feel so bad that you’re in so much distress. I certainly hope and pray that your situation improves very soon. Do keep us posted. Once again, all my best to you, dear. God bless. 🙏😊👍

[Paul_Mac in reply to Sammi_n_Munk]

I don’t think so, I’ve missed so much out because it’s so long and complicated because I would never have gotten round to posting... 😅

Plus it’s been a long time now I would have thought I’d have seen a little improvement by now.

I tried 2oz of celery juice a few times back in December 2019 when I thought I might just need to detox my liver and that’s when all around my kidney liver area swelled, my skin changed colour and I noticed my ankles would often swell a little, because my socks would sink into my skin. My ankles continued to swell from time to time until I stopped adding salt to food.

Hope you get it under control.

I’ve updated my profile pic to give an idea of the change in my appearance the past few years.

[Valerietemps]

Hi Paul I’m so sorry for all you’ve been going through. We can’t diagnose but can share. I had to diagnose my Chronic Kidney disease myself by reading the note on my blood work results. It said if you have these results 3 tests in a row, you have CKD. My GP never told me that. After 3rd test I pointed it out to her and she said “ I guess I have to send you to a nephrologist.” So don’t count on them. I’ve had a lot of rashes and bad reactions to RA meds. Also I was wondering if anyone suggested a drug holiday for you to find your normal baseline. Don’t feel bad about depression, I’ve had it bad after the breakup of a 30 year marriage. I’m fine now even with the CKD and RA. I’m off antidepressants and finding my joy in the Lord (and a grandchild.). I was wondering if you played a lot of sports. Did you suffer concussions?

[Paul_Mac in reply to Valerietemps]

Thanks for replying. I’m happy your doing better...

I’ve requested all test results for the past 4 years, so will go through them when I get them. Also I haven’t taken any medication for almost 3 years, something is permanently broken inside me and I just can’t find what is.

I played rugby league as a teenager and sustained several concussions during the 90s playing It and by other means, in a minor car accident, slipped and hit my head on a concrete kerb (this one was when i was 16, I don’t recall doing it, a friend came to check on me the following day and I didn’t have a clue what he was talking about). Why do you ask?

[Sammi_n_Munk in reply to Valerietemps]

Hello Valerietemps. Glad to hear you’re doing better. I’m sorry to hear about your breakup. You mentioned that you suffer from rheumatoid arthritis. How do manage with the pain? I ask this because I suffer from chronic gout since menopause and due to my CKD. I can no longer take NSAIDS because they were contributing to my kidney issues, so now I basically only take 1 colchicine tablet a day, and that’s only because I have no choice in the matter as I probably wouldn’t even be able to move without it.

My rheumatologists have said that even that daily dose of colchicine will continue to contribute to the deterioration of my kidney function, as it is a very powerful anti-inflammatory, but there is really nothing else that will work to relieve the pain from gout. I guess I’m just hoping you have a secret for pain relief. Lol!

I get by though by working on diet, exercise and drinking water. I don’t take any medications unless it’s absolutely necessary. I think sometimes, it’s the medication we take that contribute to organ failure of any kind. But that’s just my opinion.

Thank you so much for allowing me to babble on like this. Do take care and God bless. 😊👍

[Valerietemps in reply to Sammi_n_Munk]

Sorry to hear about the gout. I have been taking medications that attack my immune system since 2007. I’ve had a lot of bad side effects from them. I get an infusion of Actemra now. Was once a month, trying to stretch it to every 6 weeks because I’m suspicious as to whether it brought my eGFR down. As long as I’m not in a flare up I do pretty good. I can hardly function in flare up. I hate the meds but I’ve tried to stop and I flare up right away.

[Sammi_n_Munk in reply to Valerietemps]

Hello again Valerie! Hope you don’t mind but I did some research on Actemra and I found this really disturbing article that I wanted to share with you. Not sure if you’re aware of it or not, but I just thought maybe you should read this. I hope you don’t mind. I hope it can be helpful to you somehow. Perhaps you should speak to your prescribing doctor to find out more about this. Let me know your thoughts.

statnews.com/2017/06/05/act...

[Valerietemps in reply to Sammi_n_Munk]

Thank you this is very enlightening. My rheumatologist doesn’t want to discuss side effects because I have complained so much, but now I see I wasn’t crazy when I told him my heart was bothering me on some of them. There are only very bad meds left. I wish I could stop taking it, but the flare ups are debilitating.

[Sammi_n_Munk in reply to Valerietemps]

I’m sorry about that, Valerietemps. I didn’t want to upset you, I just thought it was something that you should be aware of in case your medical team neglected to mention it to you.

I know what you mean about how there are only very bad meds left. I actually initially got gout because of a new blood pressure medication that my doctor had prescribed for me some years ago. It was called Coversyl Plus. I had read on the package that it could cause gout, but at that time, I was a little naive and didn’t believe it could happen (I was only 40), I thought I was too young! Lol! But it happened, so I completely understand about nasty medications.

Again, I hope I haven’t upset you with that article. If I have, please accept my apologies. It is such a shame though that pharmaceutical companies couldn’t put something together for us that could provide a remedy without the harmful effects.

I wish you all my best. Take care and God bless. 😊👍

[Valerietemps in reply to Sammi_n_Munk]

No no I’m not upset and I thank you for the article. The nurse tells me I can’t be losing my hair from it because there is no warning for that. There is no warning period on it. Thank you for looking into it.

[horsie63 in reply to Valerietemps]

Yeah, and statins don't cause daily migraines and yet for three months I suffered from them, they even tried anti seizure drugs which did nothing but give me brain fog. I finally stopped and lo and behold my migraines stopped. I would rather die of high cholesterol than take a statin.

[Valerietemps]

Yes, I will be praying you do. If they don’t treat you with respect, keep looking. There are good doctors out there. I will keep you in my prayers.

[Paul_Mac in reply to Valerietemps]

I edited my first response, as I missed most of it the first time of reading. What’s the relevance of concussions?

[Valerietemps]

Well I know that a lot has been learned about their effects on the body and you mentioned brain fog which can be one. Also skeletal issues from injuries. I’m not a doctor but it’s worth maybe seeing a good sports medicine doctor.

[horsie63]

Have you had your thyroid checked?

[Paul_Mac]

I’m not sure to be honest, it’s been years since I last had tests. I’ve given up trying to find out just plodding on living in isolation avoiding everyone and everything.

[Polaris_Ab in reply to Paul_Mac]

Hi Paul,

I'm so sorry for what you are going through. I think I understand how you feel, as I am in a similar situation.

I wanted to connect with you because it seems as though we have similar symptoms (kidney pain, dark urine, muscle pain, hair loss, leg swelling, and possibly more).

I'm wondering if any of your symptoms have resolved of changed?

In regards to the dark urine that you were experiencing, was/is it like unusually bright urine despite adequate liquid intake? Do you still have this? Sorry for this question (kind of personal?) I just notice that it is a particular symptom that people with a certain collection of symptoms (similar to you and I) seem to have, and I think it could be an important clue for diagnosis.