Nephrologist Visit…

I saw my kidney doc today via tele-health conference. I haven’t let anyone know as of yet about the appointment because it’s hard to know what to say or how to explain it, as I don’t really know what’s up.

They didn’t find any lupus nephritis or mixed connective tissue disease effects on my kidneys which is good I think.

She said in one part they found something a bit weird like stands of the kidney being pulled apart. This can be a rare disease that I can’t remember the name of now but she said if it was for sure the whole biopsy would have looked like that so she’s not sure.

She said all my tests are back to my norm which isn’t completely norm but they’re not at the alarming numbers they were with the one set of tests.

She said things in the alarming tests could have been read wrong, or it could have been this disease that’s known to show up like this out of nowhere and go back to what is my not normal norm.

She also said there’s a possibility that Humira which I’m on could cause this to happen.

Soo..

I feel like I came out of the appointment with less answers then I went in with and I still don’t know why my kidneys are leaking even some protein and blood.

The Dr. is going to put me on a blood pressure medication but, not for high blood pressure. It’s to see if she can stop the fibers from pulling apart in my kidney and leaking protein.

I’m sure as you read this, you’ll understand why I’m confused and don’t know what to say in updating people. I wish that I could remember the name of the rare disease. I’ve never heard of it before and if you know me at all, you know that I am the queen of medical research.

I will be yet again followed by my kidney doc for the next year (Or as long as I live here) getting blood work done again in two weeks and then every three months there after.

As far as the nerve damage, I’m still in a lot of nerve pain but it doesn’t feel like I’m being stabbed by a hot poker every time I move certain ways now, which at least allows me to get dressed and drive easier. I also still have some numbness. The kidney doc says I need to find out what’s going on with my back and that I should follow up with my Neurologist who never called me back regarding my MRI results. My GP shared them with me.

She said the Neuro should have followed up with me regardless of the results. And I should ask about getting an MRI or a cat scan to figure out what’s wrong with my back. Again I don’t know if a nerve was nicked by the biopsy or if the biopsy triggered my injury into a bad state.

I called the Neuro today and of course I didn’t get anyone in person, so I’ve left a message and will await a callback.

I feel like I’m just getting passed off from doc to doc. Well maybe because I am. I just wish the kidney doc cold have ordered an MRI or cat scan for me rather than make me contact the neuro. The nuero is a 10 hour round trip drive away too and, I can’t make anymore trips. My back, the weather now, and just having had enough, I just can’t do another.

So that’s the update.

Here’s what I know about my body and why I’m not really celebrating…This is the way things always go for me when something is very wrong. It rarely ever shows up in tests right away, and then all of a sudden way down the road what ever is wrong will suddenly start to show up. It happened this way before I lost my bladder and it took 3 years for RA to start showing up on tests..Etc. I knew long before docs that I had RA. I suspect eventually whatever it is will show up. I’m guessing it is related to autoimmune disease be it lupus nephritis or otherwise. I’m guessing the “weird” part she did see will reveal itself further over more time. It just seems I have symptoms always long before it hits my blood or other tests that would reveal the issue. I didn’t bother telling the Dr. that. I didn’t see what the point would be in doing so.

Do any of you have symptoms long before things show up in the Dr.’s text book tests?

Stop the Snow & Bring Back Summer,

CrankyPants

 

18 thoughts on “Nephrologist Visit…

  1. This must feel frustrating to you. The human body is strange, and makes it difficult for doctors to find diagnoses. But I’m glad to hear that your nerve-damage pain has decreased. There’s a little something to celebrate, at least.

    Liked by 1 person

    1. It is. It’s not that I want something to be wrong, I’m just tired of always being in limbo with what that is. I’m very grateful I can drive, and wear clothes (For other’s sake as well) and get around a bit easier.

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  2. Compartmentalization is inherently irrational (and patriarchal). Doctors do this all the time, Western medicine is based on compartmentalization (and irrationality/patriarchy) that’s why we are passed from doc to doc like the proverbial hot potato throwing money around like drunken sailors which the doc love. It’s maddening. I knew something was very wrong with me for a full decade before I got a diagnosis. That seems to be very common and some people are very sensitive to bodily sensations and we know even earlier than most people that something is wrong.

    That said, and I hope you will forgive me for saying so, I still don’t understand why you keep playing their game and I wonder what you are getting out of it to keep wasting your time this way, not to mention putting yourself at risk for medical mistakes, side effects and the like. I know you said that information is like a balm for you, and helps you cope, and I get that! I was the same way in the beginning and just wanted information. I wanted it so I could try to heal myself though, or so I could take medicine that would cure me. Some people do it to get disability benefits which I also get. What point is there anymore when you don’t need additional info to get disability benefits and when you know you have an incurable progressive disease? I just want to make sure you understand that you can change your mind about “information seeking” if it becomes not worth it anymore to keep getting information. Google “law of diminishing returns” if that will help, it’s the principle that after a certain point the energy output exceeds the gains and things that were worth it at one time can become not worth it anymore over time. I’m just saying.

    I really feel for you and your plight Carrie. You seem like a kind, big-hearted person and you do not deserve what is happening to you, none of us do. But they aren’t going to stop torturing you, not when it’s literally their job. We have to be the ones to recognize and say “enough” when we have had enough. If we don’t stop it, it will never stop. They will literally keep flogging us for hours after we have died because that’s what they were taught in medical school (they also torture and perform experiments on live animals in medical school, these are the kinds of people we rely on to heal us, never forget that). I hope you get some relief soon and that it lasts. I wish that for us all.

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    1. Thank you Canna for caring so much. I quite honestly am not far from saying to hell with them all. I’m not going to lie I’m weary of it and as you’ve said, I just get sent in circles. I have taken a stand on refusing prednisone and I will continue that stand, I think it’s poison and gives people false hope yet leaves them with horrible long and short term side effects and damage. I don’t understand how docs so freely give that out but don’t offer mm. It’s ludicrous to me. I’ve been told by my gp more then once that I cost them money. My Neprologist is a pretty good doc but when I told her that was said she said I did but that’s what they do for people when they can’t get that far away on their own due to medical issues. I think they forget we are sick. They see us as cases or dollar signs and not suffering human beings. It’s very obvious to me that my team of docs have never suffered like this. Anyway that said, I’m not fully ready to completely leave as that scares me too.
      Have you just accepted that what ever happens, happens to you with your illness? Like letting nature take it’s course and keeping yourself as comfortable as possible? I was just wondering. It seems to me that the medical world is so damaged that you can’t trust much. And money is definitely part of that.
      I’m not sorry I got transported the way I did. Whether they like it or not, it was the only way I was going. As far as research I probably should back off it. I’ve just always been fascinated with medical everything. I think if I weren’t ill, I may have ended up working in the medical field somewhere. I love it.
      I’ve just been diagnosed with all this at once in the last year, so I haven’t even fully wrapped my head around it all. I don’t have time to process one thing before the next hits. I could use a break that’s for sure, but these illnesses never let up. Right now I’ve also been waiting a long long time for referrals to a GI and a Urologist. I’m not fighting to get in to them right now because I need a break. So my gut issues wait. The Urologist is a bit more necessary as I haven’t had my stoma looked at in almost 20 years and there are some concerns I have with it. That’s pretty necessary to be seen at this point. Sorry I’m thinking through what you are saying as I”m typing.
      How are you doing with your flare?

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      1. For my condition, for now, which I am able to somewhat manage with MMJ, I have decided to let nature take its course, yes. And it’s not for lack of trying Western medicine or even alternative medicine as I described below, I tried everything. I did Big Pharma for 2 years and it was making me feel worse and I was on Prednisone and other crap that wasn’t working. And I just do not tolerate chemicals and drugs well anyway. So Humira and stuff like that I really feel isn’t an option for me because I don’t think it would work, and I know I wouldn’t be able to tolerate the side effects, plus I don’t have anyone to take me to appointments and stuff bc I am alone. If I had mobility issues though, or a medical device like a bag/stoma I guess I would have no choice. But that’s the thing isn’t it? Once you let them start cutting you up, and certainly once they put a bag on you, you are stuck with them for life. I’m trying not to go down that road because I know it will only get worse. I’m fine with being untreatable and incurable, and progressive. I will be all of those things anyway, regardless of whether I waste time and money on Big Pharma or not. Reading the experiences of other Crohn’s patients has helped me make the decision to abstain because almost all of them are taking the Big Pharma route and they are still getting worse and worse over time and having gruesome interventions and hideous side effects on top of it. I’m sensitive mentally and physically (and I have no help if the shit hits the fan with opportunistic infections and whatnot) so for now, I’ve decided to abstain. We will see how it plays out over time. For your mobility issues and stoma, I don’t see an alternative for you, but for the other stuff you may be able to opt out. It’s a cost/benefit analysis in the end.

        Liked by 1 person

      2. I can totally understand why you’ve made the choice you have. It sounds like for you, you’re living the best quality of life you can given your illness and the medical route wouldn’t allot you that. I’m getting there. I feel like they cause me more stress then anything at this point and very little help. I do fear atm the thought of not being on Humira or something of the like as I know it is helping with the pain. I feel it wear off at about day 10 (I take it every other week) and the pain is scary. I wonder how I’d cope if I were in that kind of pain all the time. The pain is enough on Humira. Having said that, Humira may be what’s causing ms like symptoms and possibly my kidney thing. Having said that, I had the kidney thing before I started Humira. So I don’t know. It’s crazy. I’ll hopefully only need to see a Urologist once so they can take a look at my stoma. I’ve never had it or any part of my ostomy checked since I got it done 20 years ago. I’d also like to ask that Urologist if he has a clue why I have extreme frequency. The Nephrologist doesn’t address it. I’ve heard from quit a few in a Urostomy group I’m in that it could be because my urethra wasn’t removed. If that’s the case it’s tortured me for all these years unnecessarily. It’s totally robbed my life, my ability to work for years prior to the RA diagnosis. If there’s anything that could help that I’d be willing to look into it.

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      3. If the Humira is giving you profound pain relief, that’s important. I was about to go that route and it almost seemed like divine intervention at the time that I didn’t (see below for more info on that debacle). I would’ve done absolutely anything for relief, I was so desperate and out of my mind with pain. But if you think it’s also causing other problems, maybe you can get pain relief somewhere else? Does MMJ work for your pain? I know you want to take something that’s supposed to stop the progression, but what if nothing can stop it? That’s what it seems like to me by reading the message boards. Everyone is getting worse no matter what they do. If they work at all, the meds only work a little or for a little while and by then you have 3 more diseases you didn’t have before that the meds themselves caused. Sounds like that’s exactly what’s happening to you.

        It seems like pain relief is the most important thing and also the easiest if you have access to MMJ. If all you need is pain relief with no side effects, maybe that would work for you? I cannot stress enough how important pain relief really is. It’s like night and day even tho I’m still sick. I don’t blame you for not wanting to give that up. My feeling at this point is, I was dealt a shitty hand with an untreatable, incurable, progressive disease which I can’t do anything about (except treat the pain) and at least MMJ won’t make me worse.

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      4. Very true everything you’re saying here. I’ve been trying to get a hold of the mmj place here. Since marijauna has been made legal now it’s extremely hard to get anyone to call back or get anyone in person. I want to go the medical route because then I know it’s safe and it’s a tax write off. You are such a strong lady and highly respect you. I think it’s not going to be much longer for me dealing with the medical world. I would much rather get pain relief without terrible side effects or extra diseases. lol I’m so tired of 10 hours trips too. We plan to try selling our house again this spring and move back to our home province. I sure hope we can get out of here. Living up here has been hell on earth and it’s where I’ve started to go downhill fast. Back in my home province if I need a specialist they won’t be 10 hours of driving away.

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      1. I went to every type of doctor I could possibly think of once I got health insurance through my first job (I didn’t need a referral) starting in 2005. My symptoms were present but manageable since the 90s but by 2004 were becoming unbearable and were all over the place including systemic swelling with pitting edema in my ankles, weight gain, abdominal pain, cystic acne, joint pain, neck and back pain, heartburn and food intolerances. The pitting edema was the most distressing thing to me and it’s when I knew something was going terribly wrong but it’s the one thing no one had any idea what might be causing it. I went to the ER and then saw a cardiac specialist, neurologist, endocrinologist, GI, nutritionist, and a chiropractor. They found nothing except an ovarian cyst, minor scoliosis and minor inflammation in my stomach. I did not have a colonoscopy at that time because I wasn’t having lower ab pain or diarrhea/constipation then.

        I was able to somewhat control my symptoms, including the edema, with dietary restrictions so I stopped pursuing it until I started having vertigo so had a brain MRI that didn’t show anything. Finally I could no longer control my GI symptoms with diet and OTC meds and supplements anymore. That was in 2012. The ab pain was becoming unbearable and I got sick no matter what I ate even if it was baked chicken and cauliflower (totally bland with no allergens). Things started going downhill quickly starting that summer and I went to the ER in the fall. They did a bunch of tests and only found the ovarian cyst. I went back to my GI with all the test results from the ER and since they had ruled out all “female” issues the GI felt he could order GI tests at that time. I had a colonoscopy, capsule endoscopy, abdominal CAT (I think that’s all) and was diagnosed in 2013 from the results of all those tests which showed thickening and ulcerations. The ulcerations were “textbook Crohn’s” apparently, despite a negative biopsy. I declined a second colonoscopy and “deep biopsy” bc they said it wouldn’t change the diagnosis or treatment even if it came back positive the second time.

        I do think if I hadn’t gone “all natural” for 20 years before I got “really really” sick, that I would’ve gotten a lot sicker a lot sooner. But in the end it wasn’t enough which makes sense since Crohn’s is both incurable and progressive. I did the best I could and probably bought myself 20 years. The jury is still out obvs on whether I saved my colon and how bad this is going to get over time. Sorry for the tome, my story like many of our stories has several volumes and twists and turns. As I said, it was the swelling that did it for me and it was 10 years before I had a diagnosis but I knew, absolutely knew that something was terribly wrong. I “looked” fat and was gaining weight but I had never had a weight issue in my life and it was obviously swelling, not fat. I still haven’t gotten an answer as to what that was exactly. I still have it and it gets worse when I’m flaring. So autoimmune/inflammation, I guess. And the whole time I had to go on like nothing was wrong because I had to support myself. I put myself through college and law school and worked as an attorney for 6 years before I got seriously ill. I was able to pay out of pocket for all the tests in 2012 too, and so once the GI was on board I had a diagnosis within 6 months. It would’ve been even longer if I had to wait for approvals and whatnot and I was getting sicker and sicker. Who knows if I would’ve even gotten a diagnosis at all if I hadn’t been able to pay for it and get it done quickly. I do feel lucky in that respect to have a diagnosis at all.

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      2. Wow! You’ve been through hell and back. I’m really glad though that were able to pay out of pocket and get answers. I have to say congrats on putting yourself through school and becoming a lawyer! That’s no easy thing to do well, let alone very ill. You inspire me. When and how did you decided enough was enough with the medical world? Was there a specific straw that broke the camels back?

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      3. Well I wasn’t “very ill” until the end after I had practiced for 6 years. There is absolutely no way I could’ve done college or law school as sick as I am now. And I doubt I will ever practice again. I was having symptoms the whole time I was in school tho which cost money, time and energy to mitigate and I had constant sinus infections (and antibiotics) from what I now suspect was allergic rhinitis (also autoimmune). It definitely made things harder. As for the last straw, it was in 2015 after 2 years of Big Pharma, I was only getting worse, and I applied for health insurance and was placed on Medicaid bc I wasn’t working as an attorney anymore by then and I qualified based on a small income from the home business I started in 2013. My GI docs were preparing to start me on Humira or another infusion but when I got on Medicaid they fired me because they didn’t take Medicaid! And the first thing Medicaid did was to deny the meds I was already on (Pentasa) and then I had no doc to prescribe the infusions. I was about to be untreated, with no doctor, and I knew I was going to be in and out of the hospital and fighting with Medicaid at that point and for what? The meds weren’t working and I was scared shitless of the infusions anyway. So that was the last straw. I was on a plane within 2 weeks to treat with medical cannabis in a legal state. I flew here 3 years ago with one suitcase and then was too sick to leave.

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      4. Oh my goodness your story makes me so sad. It’s sad how this world is happy to put money first over people’s lives. I’m sorry the system you worked for in a sense failed you so horribly. I wish things could change but I know they never will and will likely only get worse. ❤

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  3. I can’t figure out what I’m replying to anymore so I will start fresh lol. If you are desperate to talk to someone about MMJ itself (the product not the legal part or anything Canada-specific) you could call an American dispensary! They pick up right away. If you want to message me privately I can give you a couple of phone numbers for the ones I use, but really you can Google any American dispensary and ask them questions about product. That’s what I did when I was researching it. They also answered questions about how to get the card and whatnot but that won’t help you with your Canadian card. Although I asked a lot of questions before and after I got here, I found that trial and error was the best way to find something that worked for me. I really hope you can find something that works for you. If they have recreational pot up there, it’s basically the same thing medicinal-wise, it’s highly regulated and just as safe, and you don’t have to worry about getting your card. As you are experiencing, the bureaucracy of getting any medical care is probably 50% of the stress of being sick so it’s not a terrible idea to use recreational pot if it’s regulated and you have easy access to it. You can always switch over when you get your card. Here, the only difference is that med is cheaper and you can buy a larger quantity at a time. The state I chose had both legal rec and med and I did that on purpose so I could still treat no matter what happened with the card, doctors and whatnot. I could totally imagine going through all the trouble to relocate and apply for the card and then be unable to actually get product due to some red tape bullshit! I was not going to deal with that, no way. I really hope you can get out from under the bullshit and just get what you need somehow. You need and deserve a break! Thanks for the convo here it’s been lovely. And now I’m off to medicate for the night lol. Ttyl. ❤

    Liked by 1 person

    1. Thank you so much. I was a card holder in the past so I have a lot of the info already. I even have some mm here that I haven’t used yet because I don’t like vaping it. I just want the tax write off here that comes with buying it as medical. It helps. I hope that you had a great night. It’s been lovely getting to know you too.

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