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Thread: my vent rant

  1. #1
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    Default my vent rant

    OK, my turn to have a little freak out. I've been off the site for a while as I've been feeling quite off. I hate bugging my doctor as I know he's busy, and I'm always afraid that I'm overreacting. Well after a week or so of having an internal debate whether or not to contact him, and feeling progressively worse every day, I finally decided to send him a fax yesterday (at our last appointment on the 20th of October, he told me to contact him if I have any problems and he'd get back to me as soon as possible).

    I wanted to make it as easy as possible for him to give me some direction (and that's all I wanted, direction, I don't want to be molly coddled, or pampered, just want direction cuz I'm still a rookie in this land of Wegener's) so I sent him a very well organized fax outlining in point form what my symptoms are, what the variables that could be causing them are, what I've done so far to try and alleviate the symptoms, and a highlight of my ESR on my bloodwork. At our appointment (I was already feeling off at that time) my ESR was at 28. He told me that that's just one above normal (for women normal is your age plus 10 divided by 2, which puts me at 27). I took that at face value, but when I got home I noticed that compared to where my ESR has been since early July, the 28 was a huge spike. I was hoovering between 7 and 12 and then suddenly on the 15th October it went to 28. I made a note of that in the fax as well. Then I mentioned that I appreciate that he's busy and I hate having to contact him, but I would appreciate some feedback on whether I'm doing the right thing with the pred, or if I should follow up on this and see if we need to go deeper. Just some guidance.

    Well!!! I was trying to have a nap in the afternoon (because my headaches are so bad at night that I can't sleep) and I got a phone call from him. Half groggy, and in a substantial amount of pain I answered and totally got chastised for contacting him with such insignificant symptoms. (Severe headache, earache, sore sinuses and nose, sore behind my eyes, sore teeth, shortness of breath, sore ribs and chest and some joint pain in my hips, ankles and knees) He asked me which of my symptoms was the most concerning, and I told him it was my headache. He then told me that a headache is not part of Wegener's and I shouldn't be bothering him with such things because he's a busy man. I told him that a headache was the biggest symptom I experienced before diagnosis and it's what made me search out for help repeatedly. But apparently it's not in the textbooks. I have not been made to feel like this since I was a kid and got in trouble from my parents. I felt 3 inches tall and could hardly keep my tears from showing through in my voice. It was like waking up and getting slapped in the face.... by the guy who's supposed to be the one who's there to help you out. I asked him what he meant when he told me that I can call him if I have any problems and he said yeah, but not for symptoms of a common cold. The symptoms of a common cold X 100 was what put me in the hospital in the first place and what made a number of doctors blow me off. I'm glad he wasn't on my diagnostic team in the first place.

    I was sooooo choked yesterday, I felt like I could spit fire. I've lost quite a bit of respect and trust for the guy. Bri was trying to comfort me by telling me not to put so much weight into one phone call... and granted the guy might have had a bad day, but I feel it's bigger than just the phone call.

    So after beeing madder than I have been in many many years, I spent 3 hours last night going through every rheumatologist, nephrologist and internist in Alberta to see what their specialty and/or interests are and then cross referenced it with what patients say about them. I think I found someone in Calgary (5.5. hours away) who's a rheumy specializing in vasculitis and I'll see my GP on Monday to see if I can get a refferal and get that ball rolling.

    I know everything happens for a reason and this will probably turn out to be very good in the long run, but boy did it come with some very nasty feelings, and in the end I got absolutely NOTHING from him in terms of advice or guidance. He basically called me to give me ****.

    How's that for excellent care?

    There. I've had my vent rant, and I'm sorry to spill it on you guys, but if there's anyone on this planet who knows how I'm feeling I know it's you and it makes me even more determined to put our book together so that docs who think they know WG might be a little more enlightened as to what WG really is, and how different it is for everyone, and how important it is to look at each case individually.

    I'm stopping now, cuz I can go on for a while as I'm still very angry at the whole experience.

    ARRRRGHHH!!

  2. #2
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    Hi Marta

    Sorry you are suffering so much and to top it off having such disgraceful treatment from the one you ought to be able to rely on to help you.

    My husband's main symptom was the severe headaches - he had other symptoms but I think the headaches in the night were what told us - hang on there must be something badly wrong and kept seeking help from the doctors because of it. I think if it hadn't been for those headaches then we might not have pushed so hard for the doctors to do something and got diagnosed so quickly.

    Hope you can find a better Rheumy because that one sounds like an absolute a$%*hole. How can any experienced wegs doc say headaches aren't down to the wegs?

    You are an amazing lady Marta and I want to send you a big hug. Will be ordering some stuff off your zazzle site when I get round to it. Hope you feel better soon.

  3. #3
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    I so feel for you Marta. My previous Rheumy in Saskatoon, Janet Markland, did almost the same thing to me twice. Most of the time she made me feel as if I was taking up her time and was disturbing her. She told me to contact her by e-mail but that never worked either because she would barely ever reply and when she did she would only answer a couple of my questions or concerns and would not go into detail.

    What is the name of the Rheumy in Calgary? Dorothy Spence in Calgary is the contact person for that area. Her phone number is: 403-938-7600. And her e-mail is: [email protected]. She is very nice. I spent a couple of nights at their place back in 2005 to see an ENT that she saw by the name of Borys Hoshowsky. I liked him.

    God Bless,
    Phil

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    Marta -- that's a horrible experience, and I am sorry that you live so far away from a specialist who may be able to help you. A doctor should take the problems of a WG patient seriously at all times...I would certainly be calling (and getting an answer from) my rheumy if I had a bad headache, particularly if it is what put you in the hospital in the first place.

    Take care.

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    Ugh! That is so disgusting! The guy should be ashamed to call himself a doctor!

    My rheumy is the complete opposite of your' doc She will overreact as soon as I sneeze! I have to tell HER that it's nothing more than a cold at times! lol

    It just goes to show how different rheumys can be and how different they treat us, some over do it and some do absolutely nothing at all! :/

  6. #6
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    I love you guys. Thanks. It's nice to hear that I'm not over reacting, but I knew that we'd be on the same page.

    Staystronglivelong, it was the same for me... if the headaches weren't as nutty at the start I probably would have sucked it up and not got diagnosed. My headaches at the start were absolutely insane. Thanks!!
    Hey Phil, the doc I found in Calgary is Dr. Stephen Edworthy. He sounds awesome, hopefully he's taking new patients. I'll follow up on all of that on Monday and hopefully the stars align just right. Gracias Amigo.
    Jan, I'm totally with you. That's what I thought too, and that's why I was so blown away by the responce.
    Malin, can you share your doc? ha ha, it would be an awesome trip everytime I went to see her. She sounds wonderful. It would be great to have someone looking out for you when you're still trying to figure this out. Hopefully my search for a good one is fruitful and just around the corner.

    Thanks friends. You're the best.

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    That's pretty deplorable treatment. What is it about some doctors that makes them think they are better than the rest of us? I get it, they are generally smart guys, but that doesn't mean everyone else are stupid. Especially given that this is such an obscure disease, they should just no better.

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    Marta, I know what that's like, having had numerous docs treat me like that. Your symptoms are NOT trivial, and that list has me pretty concerned, actually. Please make every effort to see a new rheumy ASAP, okay? Wegs doesn't wait.

    Meanwhile, hugs to you. Better to find our your doc is not the right one before you're in a full-blown crisis.

  9. #9
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    Psyborg, I concur. I haven't had a reason to think otherwise of this guy before, but it really took me off guard. Like Brian said, he might have had a bad day and who knows what was going on in his life, but if he took the time to call me he could have been a little more helpful instead of using a rare opportunity to communicate with me to ream me out. Oh well, live and learn. He was appointed to me when I was in hospital and I haven't had a reason to look elsewhere, but now I do and who knows, I might find Dr. Perfect from this experience.

    Sangye, I promise to get on it first thing Monday morning. When I get something in my head, it's as good as done. I'm a stubborn Bulgarian. ha ha. My symptoms could easily be a cold (one of the variables that I put in my letter, along with pred wean, flu shot aftereffects, flare, or changeover from cyclo to mtx - although the last one is only days old and my symptoms have been around for a couple of weeks at least) but what I was hoping for was a professional to look at it all and give me some feedback. Yeah, no kidding better now than when I really really need him.

    Onward and forward.

  10. #10
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    LOL Your persistence will pay off with Wegs.

    I wouldn't be so fast to pass this off as a cold. A cold is not going to raise your ESR like that, and it won't give you joint pain. I also doubt that it would give you the bad headaches again. When was your flu shot? I don't remember who it was, but someone in our group said a flu shot brought them out of remission into a full-blown Wegs flare.

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