View Full Version : taking self advocacy with a little gall any other suggestions

10-18-2009, 09:22 PM
he he he I thought I would share how far I am taking self advocacy. first of all I called the mayo and got myself an urgent placment on thier appt next week. I am not waiting for any one it is all one me and it has been 7 years. because time is of the essence with me now.

the other day I had a CBC ordered because I was having a tremor side effect from neurontin. I told the doctor is there any thing else I can order before I go to the mayo next week and spend out of network money on a week long diagnostic work up. I would prefer to spend it in network if it is a test that can be done by any old lab. and he said no you are well covered. mind you my neuro thinks I have mixed connective tissue and not lupus or cidp. but no one has ordered a "comprehensive ANA panel" which would include all kinds of tests that might indicate the nature of my autoimmune situation. also no one has ever ordered a damn b12 defficiency test.

so I am sitting there and I realize hey look at all these tests I can check mark on this blood test order form. so I check mark the form in the panel and b-12 and then I looked up the diagnostic code for mixed connective tissue disease on the computer and wrote it at the top so it can be billed to the insurance co properly. easy peasy.

also I have create a spread sheet the looks like this

/////// 2002/2003/2004/2005/etc
blood tests
other tests
possible cause

no matter how organized you put radialogy and blood work results, the doctors will not thumb through everything and if you forget to tell them it is forever lost. make it a no brainer for them and make a presentation out of it bust out the power point if you have to.

please add any other self advocacy techniques you are using to move things along with these IDIOT doctors because once again the more I know the more apparent it is to me that I am dealing with a bunch of "C" students. and now I believe with the possiblity of two different distict auto immune illnesses one connective tissue of some sort and the very rare cidp (only 25,000 in the whole country have it) the more out of there league I think they are and now they are all admiting that this is beyond their capabilities.
also In the past month I have had 3 nurses and one doctor ask me if I am in the medical profession because I am not afraid to use this knowledge and terminology that I have learned form reading your threads and tirelessly reading articles and case studies and if I dont understand the jargen I stop look up a word and then read on back and forth. so I simply tell them no its just that my life depend on my involment in this.

10-19-2009, 08:22 AM
hi ricketyrose, congrats on putting yourself as number one, and focusing on your personal health. I was very impressed with the Mayo, when i went in 1996. I saw a rheumy, we discussed the different symptoms that i was experiencing, and then i spent the rest of the week seeing specialists and having blood tests. At the end of the week, i met with the dr. again, we discussed everything that had gone one, and I came home with a book of information. I hope you have a great experience there.

10-19-2009, 11:54 AM
Congratulations on taking charge. Your ideas are excellent (especially the power point idea). You are right, we must be our own and our best advocates!

Peace and Blessings

10-25-2009, 08:54 AM
I have reposted this from another forum written by "withhope"

by the way I didnt properly thank "saysusie" for all her suggestions on exstensive ana testing" thank you for taking the time to write that. it was very helpful!!

"I have a little advice on this subject.
First, come prepared with information as you have--organized and relatively concise with the results of tests and notes of previous doctors and copies of the MRI/CT scans or EMGs.
Second, pick what symptoms are the most annoying to you and tell what effect that they have on life and why it is important to you. For example, the aching, cramping pain makes it really hard to get rest at night or to walk through the grocery store.
Third, come with about five questions that are really important to you and that can be described as practical. For example, is there a better way to manage the burning pain in my legs? Prioritize which is the most important for you to have addressed.
Fourth, try to come with a goal to have a team approach to your problems that will involve the doctor and you and whoever else will need to be involved in your case (physical therapists, rheumatologists, etc). Be respectful of the contribution of each member to care as you expect them to be respectful of what is important to you in your care. It is better not to dwell of the problems in the past, but to try to look forward to how things might be better in the future.
Fifth, don't expect it all to be made right in one visit, but do hope that a plan of addressing things is made and that at least one or two symptoms are better managed. Progress is progress.

The Neuropathy Association sends out weekly email Hints to help people with Neuropathy and these were sent out recently. They are based on the book listed at the end.
What to Tell Your Doctor: Dr. James Dillard’s OPQRST System

Bob Williamson, Neuropathy Association support group leader from Virginia Beach, Virginia, shared Dr. James Dillard’s handy OPQRST system of keeping a list to show your doctor. It’s another way of recording your symptoms:

O = Onset. When did the pain start?
P = Provokes. What provokes the pain?
Q = Quality. What does the pain feel like?
R = Radiates. Does the pain travel or stay in place?
S = Site. Where do you feel the pain?
T = Timing. When do you get the pain and how long does it last


What to Expect When You See a Neurologist

Before you choose a neurologist, talk to people in your support group and ask them to recommend a doctor. Above all, find a neurologist who is board certified in neurology and trained in neuromuscular neurology. You don’t usually buy the first car you look at, so be finicky about choosing a neurologist-who will probably outlive your car. And try to find one who is a good fit with you from a personality standpoint, someone who makes you feel comfortable.

A neurologist is what you need, a specialist who deals with testings and evaluations of frightening problems that other doctors may not have explanations for. And you are going to see him about tingling and burning? Yes, you are. If it’s annoying, frightening, or painful enough, causing you to lose sleep, forcing you to struggle to stay employed, or changing your style of life then, yes, you are going to see a neurologist.

Bring your pain diary. Your organized history will show the doctor you’re serious about your illness and she’ll appreciate your coming to the point. Your neurologist will want to know 10 things:

How would you describe your symptoms?
When did you first notice them (onset and progression)?
Has the pain changed your quality of life? Has it worsened? Lessened? Stayed the same?
Are you taking prescription medications? Over-the counter ones?
Do you take supplements?
Do you have any other medical conditions that exist now? Ones that existed in the past?
How are you being treated for them? What medications?
Does anyone in your family have neuropathy, or did anyone?
Do you have sensations in your hands that mimic those in your feet or in any other parts of your body?
Was there an event that might be causing nerve compression?


What to Ask Your Doctor About Tests?

Here are seven questions to ask your doctor taken from Working with Your Doctor, by author Nancy Keene:

What is the purpose of the test?
How will it contribute to diagnosis or treatment?
What are the risks associated with this test?
Are there simpler, less risky ways of getting this information?
What are the side effects, and how often do they occur?
How reliable is this test?
How reliable is the testing facility?
Be sure to take notes, and if the doctor is talking too fast then say, “Slow down!” Perhaps bring a tape recorder with you and record all this information along with the results the next time you go into the office. The best memory goes by the wayside at a doctor’s office. Ask for a copy of all your medical records, especially tests. Save them.


10-25-2009, 09:02 AM
Great info Rickety!
Thanks for sharing. You have earned a MD in my book..! Great to be your own advocate. I guess in the longrun we all have to fight for our own causes..

10-26-2009, 04:25 PM
hmm I am going to be totally pissed if some stupid doctor figures out what I have before I do. hehehe. it has become entertainment to me. you have to laugh other wise you would cry.

10-26-2009, 04:58 PM
Love the idea of your spreadsheet rickety rose! Very handy, especially if you end up applying for SSDI in the future.

Can you clarify for me....did you actually check off the boxes on the lab slip that your doctor completed/signed for blood tests that you believe you need and submit it to the lab?

10-26-2009, 07:46 PM
great job Ricky! I've had the docs ask me if I am a nurse too. I just laugh and say no, I just know alot about what is wrong with me.

One thing I do that always knocks the new docs socks off - I bring photos of symptoms in flare that I experience the most. It's so much better then trying to get someone to understand exactly what I mean when I say my rash is prickly and hot and raised and looks like flesh colored pimples but aren't really pimples. LOL! :)

10-26-2009, 07:59 PM
I wrote an article about this. It can be found here

10-26-2009, 11:19 PM
yeah I checked marked the boxes and then looked up the diagnostic codes so the insurance co would justify it. I googled for example "diagnostic code for sjogrens". everything has a unversial number the health care uses. funny thing is that I didnt even know that at the time I just saw the other numbers the doctor wrote at the top and thought maybe that that was what it was so I looked up "that number" with the phrase " diagnostoc code" and sure enough it corresponded with the real reason he had ordered the tests, metabolic. one has to be careful though becasue as a women I cant stress the importance of credibility. because how often are we accussed of hysteria in all matters not just medical everything.

great article I am going to print that up. btw

10-27-2009, 06:43 PM
hi ricketyrose. You have been a very busy lady, congrats again for all that you have done for yourself. When I went to the mayo, they wanted to run all of their own tests. This goes along with the trust that different drs./institutions have in the specific lab that they use. The labs at the mayo found the blood in my urine long before the labs that my dr. at the time. While you are there, why don't you visit the accounting office and see if there is some assistance/discounts that can be allocated to you. Next week....that is outstanding. Keep us posted.