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  1. #21
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    Hi Pete

    I've started my list of questions for the doctor's appointment as soon as my family doctor said I needed to start treatment ASAP. I only have my daughter and brother left, but my brother said he would go with me. The after visit summary, would I get that later or at the end of the visit? Never heard of it. This would be very helpful having this and I will be asking for one.

    I only have the sneezing and can feel mucus in my chest. No blood that I can see (that's good) . I will be calling the rheumy again today just to make sure no one has cancelled.

    Well, the sun is out and I have the music on and going to enjoy my day today. Hope all of you have a wonderful day

    From what I have read they have to do a biopsy to make the final diagnose, is that correct? A blood test alone can't tell them?

    Thank you again Pete for all your helpful advise!!

    Sue

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  3. #22
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    Hi @marta, I missed you around and I allways love to read your writing, as long as it might be.. I was asking about someone else who forgot her username. I am glad you have a good summer.

    Susan, in most cases WG diagnosis is made by taking a biopsy from the lungs or the kidneys.
    Did they check your creatinine (in your blood tests) - To know if WG is affecting your kidneys ? Did you see a pulmonary dr. to check your airways ?

    In my case they didnt do biopsy in my lungs out of ignorance at that time (wg is rare in Israel much more then it is in Canada). Later they did biopsy only twice in my nose. But nose biopsies are not reliable so mine turned out negative although I do have WG. My diagnosis came after a case conference that they did, discussing all my symptoms.

    I think we had here a thread about what to ask the dr. In the first meeting. I will see if I can find it....
    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.

  4. #23
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    Check this thread for some good advices:

    http://www.wegeners-granulomatosis.c...g-with-Doctors
    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.

  5. #24
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    I would love to read the thread to see what questions to ask.

    The blood test that were done were for me were:

    C Reactive Protein - came back levels were 1.6 (intermediate)
    Nuclear Ab - Neg
    Neutrophil cytoplasmic Ab pattern - came back "Positive PR3-ANCA and neg MPO-ANCA
    Rheumatoid factor came back high - 406 (not sure what this means)
    Proteinase 3 AB came back high 1.9 (not sure what this means)

    I have had blood in my urine for almost 3 yrs now. Saw a Urologists a yr ago and it showed large blood vesels in my bladder, he said some women have it and not to worry about it. (but maybe it all makes sense now with WG) ??
    ,
    I see a pulmonologist for my COPD and I am wondering if I should call her office and let her know about the findings "positive C-ANCA ????????????????????

    If you find the thread please do let me know.
    ..
    I am just learning how to use this site, lol..OK no laughing

    I love all the help I am getting on here today, I am calming down lots and getting some answers. What would I do without all of you!!


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    I would love to read the thread to see what questions to ask.

    The blood test that were done were for me were:

    C Reactive Protein - came back levels were 1.6 (intermediate)
    Nuclear Ab - Neg
    Neutrophil cytoplasmic Ab pattern - came back "Positive PR3-ANCA and neg MPO-ANCA
    Rheumatoid factor came back high - 406 (not sure what this means)
    Proteinase 3 AB came back high 1.9 (not sure what this means)

    I have had blood in my urine for almost 3 yrs now. Saw a Urologists a yr ago and it showed large blood vesels in my bladder, he said some women have it and not to worry about it. (but maybe it all makes sense now with WG) ??
    ,
    I see a pulmonologist for my COPD and I am wondering if I should call her office and let her know about the findings "positive C-ANCA ????????????????????

    If you find the thread please do let me know.
    ..
    I am just learning how to use this site, lol..OK no laughing

    I love all the help I am getting on here today, I am calming down lots and getting some answers. What would I do without all of you!!


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  9. #26
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    Quote Originally Posted by Susan55 View Post
    Hi Pete

    I've started my list of questions for the doctor's appointment as soon as my family doctor said I needed to start treatment ASAP. I only have my daughter and brother left, but my brother said he would go with me. The after visit summary, would I get that later or at the end of the visit? Never heard of it. This would be very helpful having this and I will be asking for one.
    My rheumy is at Cleveland Clinic and my internist is at Ohio State, both large teaching hospitals. My doctors usually have a computer on one side and me on the other. While I'm talking, they're typing. At the end of the appointment, they print an AVS and send me on my way. The AVS is also available for download from my electronic medical record. Both CC and OSU use a product called MyChart as the patient's on-line gateway to their medical records. Doctors can also see my records at both hospitals (once the releases are signed). My test results are there. I can request appointments. I can also message non-urgent medical questions and request prescription renewals. It's pretty awesome.

    Before I got sick, I was a patient at a smaller family practice. I didn't get an AVS from them because that pre-dated the federal requirements for electronic record keeping.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  11. #27
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    Yes, Sue, I think you should call your pulmy and update her.
    Ask also to check your creatinine in your blood tests. It will indicate how are your kidneys.
    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.

  12. #28
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    Hi Sue, do you know exactly which blood test indicated wegeners? Are your kidneys showing damage or was it the ANCA antibodies? Either way, it seems clear that: 1. Your doctor is pretty useless and you need a new one asap; and 2) waiting almost a month for a specialist and treatment could be too long and cause you more symptoms in the interim. I'd be breaking the rules and double doctoring. Is there a good clinic you can go to and explain that you have this disease that could be doing you damage and you need an immediate referral? Can you call the Mary Pack Arthritis Centre and ask how you get in to see Dr. Dehghan if your own doc doesn't understand the urgency and isn't willing to make an urgent referral? VGH has a rapid access clinic through which I was diagnosed and treated for RA (pre-GPA diagnosis). Perhaps there is something similar for Vasculitis. Failing all of that, you can get yourself to the VGH ER, (prepare to be there for hours), explain your symptoms and tentative diagnosis and that you need to see the rheumatologist on call because you're feeling too crummy to wait for treatment while the disease has its way with you. Any VGH rheumatologist will know this is too urgent to wait a month. If your doc told you you have GPA and did not do whatever he could to get you in to a specialist urgently, and didn't at least put you on prednisone to control the inflammation in the interim, he's not doing his job. If you're too unwell to process all of this and take quick action, please have your brother or someone else get on the phone and try on your behalf. I'm traveling today, but if you need me to I can make some calls for you tomorrow. I don't think I'll be home early enough today.

    Sorry that I haven't really introduced myself or addressed the personal and human side of all of this yet. I'm concerned about you getting decent care more quickly. I'm sorry you're looking at a diagnosis of GPA and will connect with you more... you've come to the right place! I've been AWOL from the forum for a long while, but keeping in touch with members through Facebook groups. Believe it or not, I've met one other mom with wegeners in Ladner. She was in VGH a few years back and the team there basically saved her life. She's doing relatively well. I was diagnosed in 2013 (ish). It started as a theory because I'm ANCA negative and have no kidney involvement. At first my nose and throat symptoms were thought to be possibly related to my RA. When I got bad subglottic stenosis and started choking on my own phlegm--I know, gross, right?--my rheumatologist and ENT together with Dr. Dehghan who was doing a fellowship in Vasculitis at the time, put me on imuran and prednisone and it controlled the problem. So they decided it is 'limited' GPA, which means it's respiratory and not in the kidneys. I understand that can change at any time. I've been flaring for months with prednisone the only thing that controls my symptoms, so I'm finally about to start Rituximab. In BC you have to 'fail' two drug combinations before rituxan will be covered. I tried methotrexate many years ago for RA and couldn't be tolerate it due to nausea; so flaring with my current meds is the second time the meds have failed me. Depending on the severity of your symptoms, you may want to ask if there's any way to go straight to rituximab. If not, don't waste any time telling the doctors if the meds they prescribe don't agree with you or cause too many side effects or don't control your symptoms. From what I've read and learned, rituximab is our best bet for remission with lowest toxicity and fewest or least severe side effects. It has its risks, and some people react or can't tolerate it. But it has brought many people remission...

    Sorry this is so long. I hope you dont feel pushed, pressured or panicked by all I've said. No need to panic, but it is clear from others' experiences that the sooner you get a specialist and the right treatment, the better! I'll be in touch again when I'm home and settled in. Take a deep breath, and do whatever helps you relax and rest too. You will get through.
    Last edited by LisaT; 09-02-2017 at 11:52 PM.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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  14. #29
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    Sue, I just read this after I posted a long winded reply to a different post of yours. Yes definitely call your pulmonologist. Ask her to prescribe you a prednisone dose to get you through until you see a specialist. Also ask her to refer you immediately to a Vasculitis specialist or team. There are some in Vancouver and New West (see my other reply) or she can choose from the CanVasc list you were referred to by other members. Good luck and please let us know how it goes!
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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  16. #30
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    Susan, OMG, I just read your post to me. It's so much like my early days, and I'm pretty sure your experience rings true for others on here. Your family doc needs a slap upside the head, but that's for later. Ha ha.

    I also had a doc like yours but he was a rheumatologist. He was the first one assigned to me from the hospital where I got the diagnosis, and I'm certain he had no idea about WG. He was a total jerk. Not intentionally, just scared to lose face for not knowing the disease, so he just acted big with nothing 'big' to back up the act. I also took my mom on my first visit to see him (I was diagnosed at 43, so it's not like I'm a little kid who can't understand) but he did the exact same thing. He spoke only to my mom, didn't make eye contact with me, asked my mom for my symptoms, etc. When I saw him I had just started the chemo and steroids a couple/few weeks earlier and they were still really knocking me out (eventually the drugs become a non issue but at first the chemo would knock me flat on my butt) and I mentioned to him how hard they're affecting me, so in his report to my GP he wrote down that I'm having mental/cognitive issues from the disease. I saw this only a little while ago, years later, and I so want to go back there and smack him. His karma. Not mine.

    I can say with certainty that the hardest period of this disease process is while you're looking for a diagnosis. When dumb-bunny docs keep telling you nothing is wrong, that it's maybe all in your head, that maybe you need to see a psychiatrist. Meanwhile you know you're hurting, you feel like you're getting taken over bit by bit, and the guys who are supposed to help you are only making it worse. Once you get the diagnosis for sure (I think it's more often than not verified by a biopsy) then despite the nature of the disease, you're in a better head space because you know the beast you gotta fight, and you're vindicated with proof that you weren't nuts. It's great going back to docs who missed it and told you nothing is wrong and being physical proof of their ineptitude.

    There's a great book that can really empower. It's called "The Patient Will See You Now" and highlights the fact that they, docs, work for us. Not the other way around, like so many act. We call the shots. We have last say. We can change docs. If you fall under the care of one good doc (and it is up to you, you can go back to your GP and insist that he refer you to a specialist in your disease category ... he has to oblige... all he has to do is take the referral letter he wrote the other doc and resend it to a Vasc specialist, don't let him tell you otherwise, it's his job.)

    I love that your bro was firm with him. He sounds like he needs to be dealt with that way, and it sounds like he's not even interested if he didn't even bother to look up Wegener's after he heard that you possibly have it. Maybe you can find out where the female doctor who replaced him works out of and change to her as your GP.

    YOU ARE NOT GOING CRAZY!!!! Please remember that. The weak egos will try and make you feel that way but it's not the case. It sucks that we have to stand up to a profession that nobody wants to stand up to, especially at our weakest and most vulnerable time, but that is part of the gift of Wegener's. I would never have felt so comfortable talking to docs in their own language before this diagnosis. Now I'm surrounded by good docs who I can confer with and we can make decisions together based on good risk/benefit considerations. Once you get a good specialist too, they tend to surround themselves with like minded docs, so then you have access to all the good ones. My rheumy here has referred me to some amazing docs for other things that pop up, and it's because she's amazing. Things can work out with the docs, and it just takes a little muscle and fortitude and poof, you'll see this as just another blip in the road.

    I also agree with Lisa that maybe the COPD was a misdiagnosis and it was WG all along.

    Biggest hugs possible. I hope that this all clears up quickly and that you get yourself in the middle of wonderful, intelligent, healing care (and away from your GP - he's bad news.)

    P.S. - I didn't get a PM from you. Just so you know.

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