Be your own health advocate!

[wadeheather]

I had a really good friend tell me once that "you have to be your own health advocate." I think of that everytime I procrastinate making a doctors appointment because I'm sure that I can't handle being told "stress can do strange things to your body..." or "if the chemicals aren't balanced..." or "suck it up!" again.

Thus the question:  How are you your own health advocate? How do you get through "limbo land" without snapping? And really, why does it have to be this hard???

I would love to hear your thoughts!

[doublevision1]

Saveone covered it pretty well.  I do the same: get copies of everything, ask questions, keep a log of symptoms, etc.  I have one big binder with my entire medical history in it, including CD’s of all my MRI’s.  

Some find it helpful to have a friend or family member accompany them to appts, to take notes, ask questions, provide moral support.  My husband came with me to the MS clinic the first couple of times, when it was hard for me to grasp the enormity of what I was facing.  Now I feel comfortable going on my own.

I've gone out of country (from Canada to U.S.) for a second opinion on treatments for possible 'aggressive' RRMS.  I set it up myself through Brigham & Women's hospital in Boston, who arranged everything for me. I am glad I did so as overall it reinforced my confidence in my regular neuro and current treatment plan.  I did this independent of my neuro as I wanted a completely unbiased opinion.

I have followed up on every referral, getting the name and number of whomever my GP has referred me to.  I call within a few days to confirm they have my referral and ask when I can expect to hear back about an appt.  Most often they just book me while they have me on the phone.  Works like a charm.

I read everything I can get my hands on, so I can form reasonably intelligent questions to discuss with my specialists.  When I was ‘probable MS’ I picked up a few books on the subject; once I was confirmed MS, I got every book I could find.  I also subscribe to two medical journals, Multiple Sclerosis, and New England Journal of Medicine.  Your local library may have a decent selection of MS resources, but with so much information online, that might not even be necessary.  Some libraries will give you free access to online medical journals as long as you have a library membership.  

The trick to the above suggestion is not to overdo it with the research and become overly saturated in all things MS.  I have a tendency to get into the subject pretty deep, I am annoyingly curious and am always looking for explanations, and after a while it wears me out mentally.  I have learned I need to give it a rest and pick up a People magazine every once in a while, for some balance.  :)

Both my GP and an emerg Dr told me early on that I need to become an expert in my own condition in order to advocate for myself and ensure proper treatment.  It's nice to have dr's that not only do not feel threatened by a knowledgeable proactive patient, but actually encourage patients to be this way.  I'm lucky that I haven't yet had to deal with arrogance from any of my dr's;  I would avoid this type of personality at all costs, you need the doc focused on you, not on their own ego or need to save face at your expense.  Exercise your right to choose, to the extent that your health care system/insurance provider allows.

[Wobbly]

DITTO to what 'saveone" has said here... you have to keep track of your symptoms and if one Dr doesn't help...or says, it's not my area??  You have to ask your GP to refer to another Dr... sometimes, it take "time"...

take care
wobbly
undx

[saveone]

I am dx with demylenating disease (meaning they don't know why) and Celiac Desease (CD).  I been told I have "probable MS".  I still don't have an answer to the question of MS.

I have found as time has passed I have gotten better at advocating for myself.

I get copies of everything, reports, lab work, dr notes, etc.  I read them.  I research anything I have a question about.  I make notes and jot down questions to ask the doc.

Fortunately I have a wonderful GP who listens to me and answers my questions.  If I ask to see a specialist he refers me, i.e.  urologist for urinary frequency/urgency, ENT for vertigo/dizziness affecting gait/balance, PT for weakness in hips and legs, etc.

I keep a note pad on the desk and I jot down questions I think of to ask each doctor and I ask them.  If I have a question about something that someone says something and I don't agree with I ask politely but straight forward why, what or how it is that I don't agree.  If I simply did not understand I tell them so and most are willing to go over it again.  I also never admit to looking things up on the internet.  That freaks some of them out.  After I get to know the doctor if I find they aren't threatened I then sometimes bring it up...as in my research I have found....

This is how I feel as if I have some control over my health care for a body that I can't control.

To end I have to say I have a great team of docs with the exception of a good neuro....haven't found that one yet....they listen and they answer but most of all they encourage me to ask questions or for explanations.  Maybe if I didn't have such a good team I wouldn't be as successful in advocating for myself.  As to my team I researched them also...online...ask other doctors questions...but the most informative is the nurses...they know it all...and don't forget when you are in the waiting room to ask other patients what they think of the doctor.

Wishing you the strength and peace to walk the path you are on.

terr