As discussed, I have been in a lot of doctor’s offices lately. For some reason, I also have a lot of friends who have been in a lot of doctor’s offices lately: back problems, kidney stones, knee problems, mystery headaches, and other things much more serious. Is this what happens when we get older?
Anyway, here’s what I’ve learned. Doctors are only human, but some are more human than others.
It seems surprisingly common to make your way through a series of doctors before you figure out exactly what’s going on with your mind or body. But eventually, you’ll find someone who listens to what you’re saying, speaks to you like a human being, understands what’s happening to you, and acts more like a partner than a dictator in making decisions about where to go from here.
On your way to finding this human being who can actually help, here are some tips.
>> Don’t be afraid to look stupid. If a doctor tells you something in a voice that sounds like you should understand, that doesn’t necessarily mean you will. If you don’t understand, go ahead and ask dumb questions. That’s actually the whole point of the conversation.
>> If something is worrying you, bring it up. Even if your doctor doesn’t ask about it, and even if you think it might not be related. Because it might be related! And if you leave with secret worries or concerns, has the appointment really been of value to you?
>> Don’t judge the doctor based on how nice the office is or how pleasant the nurses are. I think it’s hard not to jump to conclusions based on these kinds of early impressions, but you don’t need to have a picnic in the office with the staff, you need a medical opinion.
>> If you’re not satisfied: keep looking. The first (or second or third) doctor you visit may or may not have an answer. And even if he or she does have an answer, it may not be the right one for you. There are few black and whites out there. Keep looking until you find the right shade of grey.
And a final note: when you find a good doctor: listen, ask questions, learn what you can, and follow instructions. She’s the doctor, after all.
Related: my boss gave me this book, which I found really helpful.
Hey there, just found your blog through the MS Society and felt compelled to reach out for a couple of reasons. For one, I turned 35 on 12/12/12 – the same day you were diagnosed – and spent a lot of time thinking about my future (as I’m sure you did). Secondly, I was diagnosed five years ago today in much the same fashion that you were! Right after my wedding I woke up one morning feeling slightly intoxicated, and after being told by multiple doctors that I had an inner ear infection, a neurologist I’d never met before said, “I think you have MS, but I won’t know for sure until something else happens.” It was like I had the wind knocked out of me. What did he just say? And is that really HOW he said it? And now I just had to wait for more awful things to happen?? Sigh. Terrific. Needless to say the last five years have been a whirlwind, but since then I’ve had a beautiful baby boy and discovered a lot about myself. Once upon a time I even had a design blog, but realized I couldn’t talk about furniture when I WANTED to talk about everything else. So, I took a little break. After reading some of your posts here though, you may have inspired me to get back in the saddle. Er, on the keyboard. Regardless, I wish you well and while I’m sure you’ve established a fabulous support system by now, we peeps on the blogosphere are always around too! All the best.
As tough as it was to get the MS diagnosis, I have to imagine it would have been much worse to be told to wait and see. What?! I’m glad things are going well for you and I really, really appreciate the support. Thanks, Erika!
Thank you for your blog post and openness in regards to your Living with MS. I originally came across your blog as it was posted via Twitter by the MS Society. Having been diagnosed 8 years ago with a young family, I can fully relate to the challenges you face. I will tell you that the process only gets easier and the challenges become less.
Early on my Neuro Dr. gave me a a book titled “MS – The First Year”, which has since been shared with many others, that I would recommend as a great read for newly diagnosed.
Please keep up the positive thoughts and know that through your openness, you bring to light a condition that most people will never see.
Josh, thanks for your message. I like hearing that it all gets easier!
You are a very good writer. I am 42 and was diagnosed in the military 20 years ago. I have SPMS now but I’m still walking. Writing is a great outlet for me. I need to start a blog lol! God bless and ciao!
Thanks, Andrew! Good luck to you, too.
Katie, I too have PPMS. I was diagnosed five years ago at the age of 49. Initially, I suffered from information overload. I have since learned to accept, reflect and modify. I live life to MY absolute fullest. I have mastered the art of modification. I modify my way of looking at things and how I am able to still enjoy everything that is important. This may require scheduling activities for shorter periods of time than I would have years ago as well as scheduling time for rest before and/or after. People ask me “How do you do it?” My answer is always the same “I won’t let it stop me from living my life. I’ve just learned to modify how I live it.” I am doing very well today. I refuse to attempt to predict what tomorrow will be. Thank you for sharing yourself through your blog. My best to you. Mickey.
Mickey, I like this approach: “refuse to attempt to predict what tomorrow will be.” We can’t know it anyway, so we might as well just get on with today, right? Thanks for your comment.
Dear Katie, I just discovered your blog today — you have such an enjoyable writing style! Like you, I was diagnosed with MS very recently (about 1 month before your diagnosis). I apologize in advance for asking such a technical question (I realize that you are still in “learning mode”, as am I), but I wonder if you could tell me what aspect of your symptoms/MRI/whatever led to the “progressive” part of your diagnosis? For whatever reason, I have never asked my neurologist what type I have, and since she put me on Copaxone, I’m assuming I have the “good kind” of MS. (But as far as I can tell, I have neither relapsed nor remitted since my optic neuritis attack 15 years ago, which does seem to pose a certain contradiction with an RRMS diagnosis!) I’ll obviously ask my neurologist about “type” when I next see her, but I am curious about what factors contributed to the “progressive” part of your diagnosis. Thanks, and be well!
Hi! I have to admit, I feel nervous to answer this question. I don’t want to give you bad information, so please take this with a grain of salt. My understanding is that my history pointed to progressive (I’ve fallen and have issues with “gait” but I haven’t had any numbness, tingling, problems with my eyes, etc.) and that my MRI results confirmed that I have activity consistent with progressive disease. I definitely think it’s worth asking your doctor, just so you get a good sense of what you’re dealing with! Good luck with the Copaxone.
Thanks for your helpful reply, Katie — this topic of “type” will definitely be one for discussion at my next neuro appmt. I’d be interested to know if the neuro-opthomologist that you mentioned seeing in a previous post did an OCT scan on you, and if so, if the scans showed any atrophy in your eyes’ retinal nerve fiber layers (e.g, there can be some underlying eye problems that take some time before they produce a noticeable impact on one’s vision). Good luck with the Gilenya. (One small positive is at least it’s not injectable 🙂 ).
My eyes look normal – hoping they’ll remain so! (And I agree – happy not to have an injectable!)