MS Patients Have to Play Doctor

playing doctor ms multiple sclerosis

If there is one thing I have learned so far as a “newly” diagnosed Multiple Sclerosis patient (going on 1 year now) it’s that the most devoted doctor an MS patient will probably meet is themselves… That’s right… Not all of us are lucky enough to come across a doctor who truly wants to help make us better which is of course my personal case. I can’t speak for everyone but I have talked to many other MS patents of all ages who feel like they have to play doctor because their doctor’s just can’t seem to take care of business.

We (MS Patients) typically all do our own research on the disease, possible causes, possible remedies, cures, etc. I also find myself researching medications and double checking drug interactions among medications and there has in fact been several incidents where I was prescribed more then one medication at the same time that should not have been mixed… Who figured this out? My Neurologist? Nope. My Doctor? Nu-uh. My Pharmacist? Try Again. ME. That’s right, Dr. Matt AKA: Dr. The-Guy-Who-Is-Supposed-To-Be-The-Patient.

When you think about it this really isn’t fair… Doctors spend years going to school so they can get that little piece of paper that says “Yup, your a doctor” but then it’s like they simply stop learning and keeping up with the medical world and maybe even forget half of what they crammed into their heads before that very important test in college. So now it’s up to US, the patients, to double check our doctors work (unpaid might I add) to make sure they aren’t killing us….

This brings me to my next point: It’s just a piece of paper… All the doctors and neurologist I have dealt with seem to get really offended when you try to show any sign of knowledge relating to the matter at hand… How dare we (MS Patients) go around our all knowing doctors to learn about a disease we will be stuck with for the rest of our lives, how dare we! News Flash: KNOWLEDGE IS FREE, the only thing your paying for at college is the piece of paper you get in the end that says “This person probably should know what he/she is talking about” but like any other class about any other topic you are going to have your students who barely passed, shouldn’t have passed, or passed because they cheated. Now those people are giving us drugs and making life changing decisions for us. So please excuse our personal desire to study our particular issues in depth… We may not have a piece of paper to show that we are knowledgeable on the subject, but I guarantee you that a lot of us MS patients know just as much if not more about MS as some of these “half-ass” doctors out there.

Now I better stop here to make something clear… I don’t mean to trash talk ALL doctors, I KNOW there are some really great, helpful, doctors out there and that it’s only a matter of time before I find one of them but the point I aim to get across is that there are a LOT of MS patients who deal with this exact issue… Mostly everyone I know in fact and it shouldn’t be that way… Doctors have a Job and that’s not to walk around protecting their ego and insuring people call them “Dr. So and So”. No, it’s to help people: Hear that doctors? Your Job is to HELP people, so do your job and do it right, please! It’s really not that hard…

So until I can find a good, responsible, caring, doctor, I have no choice but to work with the system, I got. If I’m going to have to play doctor half the time then I am going to get what I want ALL the time… I know how I sound right now, really, I do, but you know what, this is how I HAVE to be, this is the attitude I HAVE to have in order for me to accomplish something positive with my health. I know what is wrong with me, I know what problems I have, and I am the only one who has taken the time to really research those problems and the possible solutions for them in depth. My doctors have done no such thing. So yes, I do believe that my treatment ideas are better then what has been so far recommended to me: nothing.

So I will continue seeing doctor after doctor until I find one that will actually listen and take what I have into consideration rather then immediately going into self-defense mode to protect their ever so fragile ego. I should be able to go to a neurologist and say “look this this and that didn’t work, I feel like this, so I was thinking we* should try this and look into alternative means of treatment such as this and that” without that doctor shutting me down and ignoring everything I have to say simply because they don’t want to hear me playing doctor.

If you don’t want your patients playing doctor then don’t put them in a position where they feel they have to…

I want to get better and I want to get better more then my doctors want me to get better so I will continue to play doctor until I get what I want and that’s ultimately to get healthy again. I will continue to learn on my own, learn from others, and maybe even start schooling so that I can confidently say I know what I’m talking about. Sure most neurologist probably went over Multiple Sclerosis briefly in college but guess what, I have a vested interest in this information and in making sure that I have my facts straight so believe me when I say, if I am going to play doctor, I am going to play a doctor who is doing their job RIGHT.

Don’t Stop Learning!

17 thoughts on “MS Patients Have to Play Doctor

  • May 17, 2011 at 11:58 pm
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    DrJim4MS Jaime Imitola, M.D.
    @
    @MS_Bloggers All MS patients need to know more about the disease, it is important to educate and empower patients, I welcomed your comments!

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  • May 18, 2011 at 12:07 am
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    Thanks! That's what I'm talking about. My neurologist told another MS patient I know that "she shouldn't do any of her own research as it would simply stress her out more and make everything worse"…. …… …….

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  • May 18, 2011 at 8:29 am
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    "Dr. Matt AKA: Dr. The-Guy-Who-Is-Supposed-To-Be-The-Patient"
    I can relate to all (sigh)

    Dao

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  • May 18, 2011 at 1:22 pm
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    problem* – funny when I need an S at the end my brain doesn't put it there and then I DON'T need one and my brain says :yeah go ahead and type it anyways" ARG!

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  • May 19, 2011 at 1:25 am
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    Just wanted to note: Jaime Imitola, M.D. is a Neurologist in Massachusetts who's clinical interest is in "multiple sclerosis patients and other neuroimmunological disorders, focusing in expedite novel diagnosis and treatment strategies."

    So as I said, there are SOME great doctors out there, I haven't met or spoken to Dr. Jaime Imitola yet but I am certain this man is one of them. So round of applause please! Thank you Doctor Jaime Imitola for your dedication to your work and your patients! I wish I lived closer! -Matt

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  • May 19, 2011 at 1:03 pm
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    I wish I ran an MS magazine because I would print this. I don't though, only the blog. If it's ok, I'd love to make my readers aware of this post, just because I KNOW we can relate to it, and part of me wishes that we didnt have to. There are many people who will tell you about how "dangerous" it is, but how is going to a dr who does not/can not help any less dangerous?
    "If you don't want your patients playing doctor then don't put them in a position where they feel they have to…"
    Best line ever! Hehe

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  • May 20, 2011 at 4:56 pm
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    I stumbled upon ur blog and have followed you for a while. This is the SAME as I have felt and its very frustrating. I had one Dr. try to tell me that "I had Fibro. and not Ms….My symptoms doesn't even sound like Ms…." I looked at him with the best "stupid" look I could give him. Then I ripped him a new one!! 🙂 Thankfully I had done my research!! I hope u feel better soon!!

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  • November 3, 2011 at 6:52 am
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    Been there… that's tough. After a few Docs who didn't listen and one who tried to tell me it was anxiety, I finally found one who actually cared enough to do further testing.

    When she got the results in and gave me my diagnosis, she said she was going to refer me to the best MS specialist she could find because as she stated, "you've had enough doctors that don't listen to you." To which I responded, "thank-you for being the one who did."

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  • November 3, 2011 at 7:22 am
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    I envy your experience then because bow I am sitting here barely able to type, nauseated by the slightest movement if my head, and pretty much unable to walk and I do not want to go in to see a doctor to hear the same thing they tell me every time and to get the feeling that they think I am full of crap making them relentless to give me treatment. I can not wait to switch my insurance where I will hopefully have a bit more freedom when it comes to finding a good doctor.

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  • July 14, 2012 at 3:58 pm
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    i have these really weird feelings going on in my legs (like someone is grabbing me)and it goes on in my back as well! It feels like there is a wave pool in my back (prob the ms hug) i called my doctor (the neurologist) and an ma came on the phone and told me not to worry that it's prob restless leg syndrome, (whichi highly doubt) what am i gong to do now? im scared and i kmow i need a brain mri! how do i get anyone to listen to my symptoms of this awful grabbing feeling iun my back and my legs? HELP!!!!!!

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  • July 14, 2012 at 4:17 pm
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    exaggerate your symptom… Sometimes it's what you have to do to get them to listen…. If it was the hug you would KNOW because it is painful… Do you have MS? Guessing no since no one is listening to you.. :^/

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  • July 14, 2012 at 4:18 pm
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    also i have a chronic patch of itchy skin on my face that wont go away! im so sick of feeling like this! (from post above)

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  • July 14, 2012 at 4:21 pm
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    theyare brushing it off as restless leg syndrome! i really do believe i have ms! im sick of feeling like this day in and day out!

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  • July 14, 2012 at 4:27 pm
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    Hmm… I know how that goes :^( I am sorry. You have to be aggressive and PUSH for it, YOU WANT THAT MRI!

    Reply

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