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Post by omaklackey on Mar 20, 2011 19:06:56 GMT -5
I was inspired by several members here who have pushed through in spite of some pretty big hurtles to get a diagnosis for some of the related health issues, not including endometriosis, that we ladies have. I’m still working on getting my diagnoses so I could sure use some help both with some ideas for getting the diagnosis and encouragement emotionally? I so often want to give up and just live with whatever it is that is wrong with me and then I start wondering… What if I’m missing something huge and life threatening? Or what if I don’t have to live like this and there is something here that could be managed if I knew what it was? So anyways, I have some questions for those who have pushed through all the doctors and specialist? And maybe for those who are like me and are still trying you might have some more questions to ask?
What are ways you get the doctor to listen to you?
When you get discouraged who do you go to for encouragement?
How do you know when to push through and to ignore negative test after negative test?
Do you do extra things to prepare for appointments with specialist?
How do you keep all the test results organized?
Do you bring notes and reports from other visits with you?
So please add to the list, if you have questions ask them, if you have answers, even better!
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Post by JC on Mar 20, 2011 19:12:30 GMT -5
I LOVE THIS THREAD! What a great topic!
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Post by hellsbells on Mar 20, 2011 19:16:08 GMT -5
I compiled a spreadsheet last year that I took to a new doc. I listed current and previously diagnosed conditions, current and previous symptoms, and a list of what I wanted the next steps to be. One of those steps was 'Consistency of care with one GP'. We talked, he agreed to be that GP so now I don't have to explain to someone different every time. We're kinda working our way through the list, taking breaks when necessary to see if any treatment makes a difference.
Also, I have a spreadsheet that I update every time I get blood test results so I can spot patterns and go to to my doc about any concerns that haven't been covered.
My encouragement comes from my closest friends, my mum and this board.
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Post by JC on Mar 20, 2011 19:24:05 GMT -5
What are ways you get the doctor to listen to you? Believe it or not, telling them I have a medical background usually gets them to listen. Sometimes, I also know what to ask for based on my own research and they will usually do it. This is probably horrible for me to say but sometimes if you just make things sound a tad bit worse than it is..... lol..... maybe exaggerate on some family history..... maybe say you passed out..... LOL this is such horrible advice but it gets the tests you need! Like with this pancreatic tumor I just got diagnosed with, I told her that my brother got his gallbladder removed when he was my age so I was afraid it was mine acting up. So not true! HAHAHA.
When you get discouraged who do you go to for encouragement? My mom! It kills me to see her worry so if I can just get some test done to put her mind at ease I feel better. I also come here for support. There was a point where I just wanted to give up and Karen encouraged me to push through. I'm forever thankful! This place offers the best support I could ask for.
How do you know when to push through and to ignore negative test after negative test? This is a tough one. I'm kinda stubborn about things and will wait a lot of things out. Or I'll try to fix the situation first before I got to the doctor. Most of the time my problems just go away. But when they don't, I go to see someone and usually they find something that can be fixed. But I would encourage you to listen to your body. If you don't feel right then you are probably correct in pushing for answers! Just keep saying," This isn't normal for me!" Explained how much your quality of life has decreased. Do you do extra things to prepare for appointments with specialist? I make lists, I make sure I have all of my questions organized. I also carry a paper around with a condensed list of all my medical problems that looks similar to those sheets you fill out at the doctor's office.
How do you keep all the test results organized? I carry a folder around that is just like the ones used for medical records. It has a two-hole punch binder at the top of the pages and multiple sections to keep things organized. I have a tab for OBgyn, GP, neurologist, radiology, labs, medications and dosages...etc. I get copies of EVERYTHING. I even have all of my images on CDs and I keep them in there. I have a business card for every one of my doctors that I keep in there too. When I go to a new specialist I whip that thing out and they LOVE having all of the information ready for them. It makes doctor visits so much easier because it takes so much work off their backs having took look up things or request records from other offices. I can't tell you how many times a nurse or doctor says, "I wish all of my patients were as organized as you!"
Do you bring notes and reports from other visits with you? I carry my personal medical record with me to EVERY visit no matter what it is. I almost always need something. I even carry it in my school backpack. lol So please add to the list, if you have questions ask them, if you have answers, even better!
As a side note, I have a little note on the front that says, "if found please call..." I'd be so lost if it went missing.
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Post by Karen on Mar 20, 2011 20:33:01 GMT -5
Great thread! Holy crap, Jenaya, you're organized! I have a stack of stuff but haven't taken the time to go through and organize it all in a very, very long time. I'm inspired! As for me, I'm still going down a long road to figure out what's going on with me but at least I'm making progress... What are ways you get the doctor to listen to you?Honestly, I've switched doctors several times... I went through three insurance companies in 3 years due to work changes so that had something to do with it, but it made all the difference. If one doc wouldn't listen, I would just find a different one. When I found one that actually listened, that's when things started falling into place. I guess to get a doc to listen to you, you have to find a doc that's willing to listen! Shame a lot of them don't... When you get discouraged who do you go to for encouragement? My dad - he's heard me break down over the phone many times. I have a good friend that's a nurse, she usually helps me interpret my test results so they don't seem so scary or give me some background on what the test looks for. And this place - the friendships I've made here have been such a godsend. There are some days I just want to give up all together and it's so nice to have the reminder that feeling sh!tty is only temporary. I know I've cried on the phone to Helen (though I can't remember what for now)! Jenaya has been great at looking at my test results and suggesting other things to look for, too. My doc is even testing some things based on Jenaya's suggestion!! As long as people can keep giving me ideas to keep working on, I don't feel like I'm at a dead end. And sometimes I've found some incredible encouragement from acquaintances that just happen to ask how I am when I'm having a bad day and it allll comes out. Happened to me 2 weeks ago at book club of all things but the support I got was amazing. Oh, and my therapist! She listens to me, gives me suggestions, lets me know if I'm really different on a new med (sometimes I have a hard time noticing because it sneaks up on me!), and recommends medical professionals for me to try. Without her guidance, I think I'd still be the wreck I used to be on a daily basis. How do you know when to push through and to ignore negative test after negative test? I listen to my body. I had one experience last year where every test came back normal and the doc basically told me to get used to how I was feeling. Um, NO! I didn't have that gut feeling that everything was ok so I kept looking until I found a doc that believed me. And I was RIGHT!!! Some of the things she uncovered were things that never occurred to me, and every time she runs tests I STILL get some odd results so we know we're not quite done yet. I KNEW something wasn't right, and now I know to trust my gut. Always trust your gut!Do you do extra things to prepare for appointments with specialist? I start writing a list of questions days in advance. I either keep a running list on my phone or throw a note pad in my purse so I can write down questions as they come to me. If I wait until the last minute, I forget them all and kick myself later. How do you keep all the test results organized? I don't, really. I have a bunch of chicken scratches all over the place that I throw in a pile. I need to get better at this, but sometimes it's depressing to spend time on stuff like that! Do you bring notes and reports from other visits with you? Yes, always bring a copy of my surgery report when going to a new doc. And I always bring a list of all the supplements I'm on.
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Post by JC on Mar 21, 2011 6:41:33 GMT -5
Switching doctors is a really good idea when you feel like something is wrong and they give up on you.
I have been sick for 6 months now, I've seen 5 doctors and 2 PAs up to this point. Each one found something wrong but didn't know what to do with me so they'd just send me on. It took me having to get even more sick to finally identify what body part was freaking out.
I hate that it turned out that way but that's how I got, what I hope to be, the diagnosis that is causing all of my problems.
So far I have been diagnosed with 11 different things. Freakin unreal. I could make a list that would baffle people.
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Post by omaklackey on Mar 21, 2011 12:02:38 GMT -5
Would you mind posting what your list of symptoms look like Jenaya? I don't mean your symtoms but it sounds like you have a pretty good way of keeping track of them. I would love to see what it looked like and it could be very helpful tool for us to use
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Post by JC on Mar 21, 2011 15:18:00 GMT -5
I just keep a list of what they are in the order of how they present. I try to pay attention to when they come and when they go, what makes them better or worse, what can I take that makes it better and what doesn't work etc. Sometimes you can do half the work for them. Like for me, I was having stomach pains. So I tried taking antiacids, malox, tums, tried a fiber supplement etc. None of it worked. But when you come to the doctor with that type of information of what worked and what didn't, you have just ruled out half of the crap they'd shove in your face to "try and see what happens." It sure saves me a whole lot of bullsh*t. It's really important to tell them what you have already tried. It helps rule out things for them so they can move on to other things.
This isn't my real list, just an example:
Abdominal pain x 1 month. Malox, tums, and extra fiber was tried for 3 weeks with no relief. It is worse at night. I can't eat x, y, and z foods. Sometimes it comes and goes. My brother had a similar problem and it turned out to be his gallbladder.
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cassia
Junior Member
Posts: 89
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Post by cassia on Mar 26, 2011 3:25:52 GMT -5
This is such a good thread, great idea omaklackey! I am just going to pretend it was my idea though. And Jenaya, yeah I would kill for your organizational skills. I can't wait to post my list as soon as I have enough information, until then I use the ideas from this thread.
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Post by JC on Mar 26, 2011 8:20:00 GMT -5
LOL I'm lauging because I am SO disorganized in every other aspect of my life. HAHA. I think I just know what doctors want and need because I've worked in the medical field for so long. That's why I know how to do all this stuff.
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Post by omaklackey on Mar 26, 2011 13:46:28 GMT -5
I have always gotten all my surgical reports and my labs but then I just lose them! So here is the plan I'm going to try:
1. I have started a file with my lab reports 2. I'm going to get the notes from the appointments as well. The doctors are always saying "lets try this" and then they don't, so I want to have their notes to say "this is what we discussed". I think it might help keep both of us on track.
3. I know when I tried to tell my husband what the cardiologist had said I had trouble keeping it straight. I think I need to take my own notes at each appointment, so I can look over them and see what I missed.
4. Organize the information! I'm still trying to keep it all organized when I head to an appointment though and thats where I haven't gotten it figured out. I think I need a bag/purse that is purely for the medical stuff. That's how I keep all my other jobs organized. I have a bag for each event so I grab the appropriate one when I head out. Its worked really well for me so far. I have a music bag, a church bag, my college bag, and my laptop bag. I think I will look for a "medical" bag to take with me to appointmens
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Post by msheathieliz on Jun 17, 2011 14:56:17 GMT -5
What are ways you get the doctor to listen to you?
I kept a symptom spreadsheet and presented it to my doctor. I listed the various symptoms down the left side and across the top put the day of the month and made a huge grid. Then, at the end of every day I took a pen and checked off each of the symptoms I had that day. After a few months of doing this I noticed trends in the symptoms and it was easier to approach my doctor. He had something solid to look at, and I think it helped us both.
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Post by msheathieliz on Jun 17, 2011 15:01:50 GMT -5
How do you know when to push through and to ignore negative test after negative test?
My doctor and his office partner both follow the rule, "We treat the patient, not the numbers." Now of course this doesn't work for everything. You wouldn't want to ignore a high cholesterol number, for example, even if you felt fine. And you wouldn't want to go through chemo if nothing was wrong on paper. But tests don't always come back helpful. They CAN help determine illness but should not be the only thing that determines if you get treatment or not. Tell your doctor that YOU want to be treated regardless of what the numbers say. You can be firm and persistent without being rude or pushy.
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Post by Karen on Jun 17, 2011 19:26:12 GMT -5
Mshealthieliz - have you ever checked out www.reliefinsite.com? They have a nice little log for every symptom in the world, pain chart, etc. And the best part is, you can print out whatever reports you need to to bring to your doc OR you can allow them access to view your progress. Right in line with what you suggested, only less work!
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Post by omaklackey on Jul 14, 2011 19:00:24 GMT -5
New Question?
When do you ask for a second opinion and how many opinions do you get before you accept defeat?
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