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When it comes to your health, never forget that YOU are the best advocate

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  • When it comes to your health, never forget that YOU are the best advocate

    I was just diagnosed with MS(Multiple Sclerosis). But I am frustrated with the medical profession as it took three years to get here.

    I posted the below text on a local discussion board a couple weeks ago(A NON MS BOARD), mostly to capture my feelings on the matter, but also to help others understand the medical profession and why it took so long to get to a diagnosis for something so important.

    "I was just diagnosed with MS. I am in my 50s and this complicated the matter, as I am atypical for the diagnosis. But despite that, I have learned a few things during the diagnosis journey to figure out what was happening to me:

    1) I am an athlete. I have been my whole life. This complicated things in addition to my age. The medical profession is tuned to the average person. Exceptional people are unexpected and harder to diagnose due to factors many doctors aren't familiar with. For one, athletes are very tuned to their bodies...they know more clearly what is normal and what is not. Convincing a doctor something was wrong was BY FAR the hardest part of getting a proper diagnosis. Why, because I looked and acted just fine. I had been compensating for symptoms for a very long time and adapting very well.

    2) Trust your body. Only you know it best. If something feels consistently wrong, it probably is. Doctors can only go by a diagnostic analysis. Theorize, Test and Review results. But YOU know what you feel.

    3) Describe what's happening as thoroughly as possible, as factually as possible, and in the language of medical professionals if possible. I learned that understanding what to call what I was feeling was very very important. DOCUMENTING the symptoms over time was also important. I found this was critical to making a strong impression, at minimum that I was very serious.

    4) Don't accept simple answers. Occam's razor. The simplest explanation is most commonly true? Not always. I was told repeatedly my symptoms were due to "getting older", OR I was "exercising too much". NO, and NO.

    5) Don't accept a BS answer. If the doctor is not asking you for more information, they are the wrong doctor for you.
    A good doctor will dig in to understand what you are feeling. These doctors are rare. When you find one, make sure you tell them that they are rare and that you appreciate it. A good relationship with a good doctor is pure gold. I went through 5 doctors before I found one that would listen. And he got it immediately.

    I remember the old joke that all you need in life is a good doctor, a good accountant, and a good priest. I can vouch for two of these....

    6) Don't give in, Don't give up. I KNEW something was wrong. I KNEW it. Really pushing to get it evaluated properly took time to understand the medical profession. Getting that across required me to learn a new language and become a warrior for my own health. A breakthrough occurred where one doctor actually thought it was depression and tried to convince me of it. He send me to his partner who was a psychotherapist. She not only thought his answer was BS, but also gave me a Medical 101 on how to advocate for my own health. She understood my situation completely and saw how frustrated I was. Best thing she did was reassure me that I needed to keep pushing. Doctors are human. Despite structured medical training, they all have their own experience and learn their own way of fitting symptoms into boxes. Don't get put into a box.

    7) MS is not the disease it used to be. 40yrs ago it was quite dire. 20 yrs ago it was considered a disease of exception. Meaning, if you rule out everything else it could be neurologically, then its MS. NOT TRUE ANYMORE. It is as much a disease of inclusion as it is exclusion. Yes, they still need to test to make sure its not something else that mimics the same symptoms (like cancer, Lyme, and oddly enough...syphilis). But there are diagnostics that can confirm it's MS. I've spent the last three months doing test after test after test. MS IS a disease that requires confirmation, as the treatment is lifelong. The good news being that the current treatments are quite effective at suppression of symptoms, although the disease itself is still incurable.

    So the good news? Well, it's figured out now. I am told that at my age, it is not likely genetic(as apparently most are). I am told the other big way to get MS is by a trigger. A serious illness, particularly a viral infection, may spark the immune reaction that causes MS. I have had several serious infections over the past few years, so take your pick. This isn't perfect science, and much is still unknown, but I am buoyed by the extent of research into autoimmune diseases like this, so the future looks bright."

  • #2
    Wryfox, I copied this post from your introductions to make it its own topic because I feel it is an important one. It is one thing to trust your doctor, but no matter what, the bottom line ends with you. You are your most important advocate when it comes to your health. If something feels off or wrong, listen to your body. You know it better than any doctor, no matter how many degrees they have.... Thanks for the post and the reminder, WF!
    Dave Bexfield