Monday, March 25, 2013

Don't ruin the dream

This entry is about a doctor appt I had today.  But just 2 minutes ago, I got an email from a family friend on possibilities for training for my next walking goal.  It is strange, but perfect timing, at the end of this particular day, encouraging me to keep striving for that goal.

I have a new job which is perfect for me.  The only bad part was having to switch health insurance and not be able to see my favorite doctor, the doctor who advocated for me, the one who never gave up on me because he knew I wasn't going to give up, the one who told me to follow my dreams.  And so I did.  And I miss Dr. Mulica, or Count, as he is also called.

Today I had to go to a neurologist.  Dr. Mulica is a rehabilitation doctor.  I have never really found a neurologist I liked, but I needed to make sure my medications were refilled.

I told this doctor about how wonderful Ampyra has been and how I haven't had an MS attack in almost 3 years; how I am walking more; how I can now write with a regular pen.  He was skeptical; I couldn't convince him.  To him, not having an attack just meant my MS was no longer that which involved attacks, and it had nothing to do with Ampyra, despite the fact that I had about 20 years of regular attacks (when symptoms get extremely worse) for all of those 20 years, and despite the fact that they stopped completely when I started taking Ampyra.  To him, Ampyra is only a symptom management medication.  He didn't share in my excitement and said he only knew one other person who he said claimed dramatic improvement.  Great.

Then he did a bunch of neurologic tests and I did fine with them; still there was no realization how much I had improved.  And then there was "you know, you have never had lesions in you brain.  You could have this other condition."  Yes, but the fact is, I have been tested for this other disease and the test was negative.  And the fact is I got stuck by a needle, right in the middle of my spinal cord, when I was 20 and alone at college, so they could take out fluid to confirm an MS diagnosis.  I don't think I went through all of those diagnostic tests, which finally showed MS, to think this is something else.  Looks like a duck, smells like a duck.  It's a duck!  It's MS, and if not, it's just Beth's disease, which looks like MS and smells like MS.

Recently I wrote a letter to the doctor who diagnosed me with MS, who told me not to lay down on the floor and die, who told me I could live a full and meaningful life.  I needed to thank him for that advice.  He wrote back and talked about how he used my case a lot, as an example of how important it is to listen to your patient, to really hear what they are saying.

And yet there I was, and this doctor today was not listening to me, but seemed stuck in a mindset that MS is a chronic disease that only worsens.

If we look at medicine these days, it seems there is so much reliance on groups of patients, putting people  buckets, and not looking at the individuals.  Certainly I cannot be different than anyone else; certainly since evidence doesn't show what I have experienced, then what I am experiencing cannot be real.  Or can it?

I think back to when I breastfed, told people it helped me physically, and no one believed me.  I wrote emails to have things taken off websites that discouraged women with MS from nursing.  Other women must have been doing the same thing.  Eventually websites changed. Eventually studies were done which showed what I had experienced - that my MS went into remission.

And here I am, again saying something that can't possibly be true.  After an appointment like that, it's hard to walk away and be happy. 

But then, as I was about to write this, I received the email I mentioned at the beginning, giving me ideas on how to keep improving, from a person who believes in me.

There are so many people who do believe in me; so many people who have encouraged me during the last almost 3 years of my life, where the improbable has occurred, so that it has been much larger than myself.

And if any doctors read this, please know how important it is to listen to your patients.  Please, never give up on them.  Please, encourage them.  And please, tell them to follow their dreams, of which there are so many.  Every person, every day, it's critical to believe, even if it all seems completely unrealistic and impossible. 

Everyone deserves the chance to dream the impossible dream, and then to chase it, full speed ahead, surrounded by nothing but encouragement.


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