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Thread: Very Sick

  1. #1
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    Default Very Sick

    Ok, so I haven't been here in about 10 months. I have not, as yet, received an actual diagnosis. I do skip plenty of doctor appts. I originally (about 3 years ago) had a few cat scans; a lung nodule and a perforated septum. A year ago my cat scan showed 2 lung nodules. The perforated septum is much bigger. And last month my labs showed Chronic Kidney Disease; Stage 3. My current primary reduced my Metformin by half and told me no more anti-inflammatories, and will see me again in March so that hopefully I won't need dialysis. I went to my rheumatologist about 2 months ago so I could get a prescription for Enbrel injections as I stopped biologics at least 8 months ago and now my hands BURN. The Enbrel is helping, thank God! I also take Hydrocodone for the never ending pain. The weather here has been HORRIBLE!!! I live in the heart of the Poconos and it will get even warmer tomorrow; close to 80 degrees! My nose BURNS! I feel better when it's cold outside and snowing. It's so warm that people can smell garbage odors from the cans! This weather is HIGHLY unusual for the Poconos! Anyway, my rheumatologist and that network thinks ALL narcotics are for drug addicts. He wants to see my medical records from my pulmonologist and my pain management doctor. I have nothing to hide. But I will not sign the release forms because I do not want him telling my pain doctor off. He is the last pain doctor around here and even he is 30 miles away. My sinuses started getting bad with rhinitis 23 years ago! At this point in my life I just want to be out of as much pain as possible. My health got much worse over 3 years ago. I am 61-yrs-old and my youngest (now 22)has Aspergers and lives with me. She is wonderful! I guess the only question I have right now is if it's necessary to have a nasal biopsy to find out if I have Wegeners. Thank you all so very much!

  2. #2
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    Hi & welcome. I am sorry for your pains.
    Nasal biopsy might be false negative. I had 2 like that. It seems that your illness is active and without a decent treatment. Once you get treatment, you will get relief from many pains.
    As much as you suffer, I suggest to be careful with narcotics. Some of them can cause respiratory depression. Ignorant docs prescribe it to patients with breathing problems while actually it make the breathing worse.
    Try to find an expert. Sending prayers. Please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #3
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    Hi Spirit, I agree with Alysia, but want to ask: Are you seeing a nephrologist? Stage 3 kidney disease requires a nephrologist, don't wait for things to get worse. I hope you find a solution & are better soon!!

  4. #4
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    I don't want to sound harsh at all, because I never want to question the health decisions other WG patients make for themselves. However, you seem to have a ton of the symptoms that are pointing to having Wegs, but are not pushing hard enough to get the definite diagnosis made and start treatment for it. Wegs is a deadly disease, and without treatment, you've pretty much given yourself a death sentence within the next 1-2 years. I understand that you are currently seeing a rheumatologist, as well as a lung specialist and pain management doctor....but are any of these specialists pushing you to get SOMETHING biopsied to 100% verify the Wegs and then get on a treatment plan for it? If your specialists aren't trying their hardest to make sure you either do or do not have Wegs, then you need new doctors. You are lucky that you have made it 3 years without any treatment for Wegs if you do end up having it. You have GOT to get an affected organ system biopsied to see if you even have Wegs. The lung doctor could biopsy the nodules in your lungs; an ENT could biopsy your sinuses, your nephrologist could biopsy your kidneys since you obviously have kidney involvement. You just need to get on someone's case to get a biopsy done.

    Have you even had the lab work done for Wegs? Have you had an ANCA panel run (should check your pANCA, cANCA, MPO and PR3)? Have they checked your ESR (sed rate) or CRP (C-reactive protein)? These things can help your rheumatologist see if your bloodwork is pointing to Wegs as well. I would be finding another rheumatologist myself, because yours seems to have just let these issues fester for 3 years and that is unacceptable. I'm upset for you - but you also have to be your own #1 advocate. If I had listened to my rheumatologist and just stayed home a couple weeks ago and NOT gone to the ER, I would have died. She told me on 3 separate occasions over 2 weeks that I would be fine, that I just needed to stop the Cytoxan and let my body heal and my bone marrow would start making blood cells again. Taking her advice got me very close to death and I am SO VERY THANKFUL that I listened to the voice in my own head that told me something was deadly wrong. You have got to stand up for yourself, because you are the only person that cares about yourself more than anyone else.

    If you do have Wegs, you have got to get started on a treatment plan for it. You need to be on a chemo drug and steroid, or on Rituxan IV, or SOMETHING. You cannot just sit there with Wegs and hope for the best. No treatment on Wegs pretty much equals death. This is an extremely serious situation and disease. Pleeeeeeeeeeeeeease take this more seriously and go find better help. Do it for your daughter. Get serious about this and get it taken care of.

    Teri
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

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    Teri says it all!!!!

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    Quote Originally Posted by JeanMarie View Post
    Teri says it all!!!!
    Agreed.

    It's dissapointing to continually hear of people with likely Wegs, who go a long time without even getting a solid diagnosis. It's not that hard to find out in many cases, but not even knowing if you could be an easy diagnosis? That is, uhm, is... uhm... foolish? Yep, foolish, or at least that's the word I'm going with here.

    Find out Spirit!

  7. #7
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    Many of us went two or three years with the typical symptoms of Wegs but none of the doctors we saw for them saw the big picture. Some of us had to nearly die and get serious damage to our bodies before we finally got a correct diagnosis that explained all these mysterious symptoms. But having doctors tell you they think it is Wegs but then won't treat it appropriately would be even more infuriating to me. That is when i would seek out a known Weg expert who is willing to confirm the diagnosis so appropriate treatment can be started. Many of us never have had a biopsy to confirm our diagnosis since they can be hard to get with limited Wegs or even Wegs in the lungs or other locations. A recognized Weg expert can usually diagnose Wegs from our history, the symptoms and our lab work without needing a positive biopsy to confirm the obvious.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Spiritscript,hi. Oh wow,please please talk to you're doctor that has u on metformin!!!!!!!!! Please! What on earth,this drug can't be taken with any kidney issues let alone stage 3! Metformin is broken down in the kidneys,and very hard on them,if there not working as they should be.. this was the first thing I did when I got sick,was ditch the met! Not waiting for a moron to tell me this! Which,by the way they did not... Good thing I like to read otherwise I might still be taking mine.. it stopped controlling my blood sugar litteraly the day all hell broke lose... U need something to control you're blood sugar,but not metformin with weak kidneys.. please look on the warning that comes with the met. I would call CVS,and speak to a pharmacist,as these guys r way more helpful than doctors,as far as I'm concerned!!!! My pharmacist rocks,my doctors suck! Please call...... P.m.s. i was only kidding about you're cat... He's very cute! Fluffy,not fat!

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    Spiritscript,hi its Deb,again. I forgot to mention,please look up metformin and lactic acidosis. I'm guessing you're doctor at least reduced you're dose of metformin? I will go back and read it again,maybe I missed it. Again please call like CVS,a lot r there 24 hrs.,and they as far as I'm concerned have more knowledge than most doctors I know. Mine anyway... I can't help on the rest as it seems we r almost twins! Maybe that's why u sent the request I don't know how to respond to! I'm sorry,as this getting help should not be this difficult.... I wish u the best.... Deb.

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    Yup, Deb again,so I read it over,and saw she reduced it to half. I would still look into this, as again met is very taxing on the kidneys. I didn't feel safe,when my problems all started,and I stopped,on my own. Please please don't do this! It was fine for me and my endocrinologist had no problems with it. Again please call at least the pharmacist. Lactic acidosis can kill u.... There r other meds to bring you're blood sugar down,that aren't as hard on the kidneys,but work more in the liver.... Buy the way,you're on my friend list,just noticed. So yay it worked, whatever I did....... Deb.

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