What's Wrong With This Picture?

I'm not writing this to trash the medical community.
Not at all.
In fact, I've grown very fond of my doctors and the hospitals that treat me.

There is something that has to be said, though.

This little story starts in 2004, about 7 years before my diagnosis. Yes, seven very long years of schlepping around to doctors and emergency rooms trying to find someone willing to listen.

Something was going terribly wrong with my body and I knew it, but I couldn't find anyone interested in helping me. I could not have anticipated this.. No, not in my wildest dreams.

Let me say this, finding a diagnosis for muscle disease or other rare disease, is not easy! It's not, as they say, for the faint of heart.

The change in my muscles' strength was obvious, yet no one tested them. For years, no one tested them! My reflexes were dull, but they weren't checked either. I complained of severe headaches, with aura. I was prescribed pain pills... Strong ones! Oh, and anti-depressants and anti-anxiety meds... I got plenty of those. (Have they become the answer to all our ills?)

"Why?" I remember thinking, "why is this so hard?"
It was a frustrating process that took many years. I would try and give up, try and give up. And so it went, for about 7 years.

Eventually, I booked an appointment at the Cleveland Clinic...world renowned, great reputation... 'Surely they can help me,' I thought.
It took all of my strength and energy to get there that day, but I made it. My hopes were high. I
expected so much.

"I'll do some labs, but meanwhile, you keep taking those anti-depressants, ok?"
I just looked at him, my face was expressionless.
My heart dropped into my stomach... 'Is he serious?' I thought.

I promised him I'd stop by the lab on my way out for the blood-work he had ordered, but as the tears began to flow, I couldn't get to my car fast enough.
Suddenly I was exhausted.
I needed to sleep.
Daily naps were also new to me. Muscle weakness, muscle fatigue, pain, headaches...all of it was
new, but the medical community wanted to tell me I was depressed or simply stressed out. I wanted  to wring their collective necks.

Yes, all of them.

Was the muscle paralysis also from depression?

Yeah. They just looked at me like I had 2 heads when I talked about that.

One time I went to an ER, already in a paralytic attack and they asked if I had always been a nut job. The 'nurse' in that particular ER also kept running over my feet with the wheels of the wheelchair I was sitting in because I couldn't hold them on the foot plates. She eventually dropped me on the floor trying to move me onto a gurney because she never really believed my legs were paralyzed.

I was unable to speak from the paralysis, or I would've screamed for someone to get me out of there! That was, without a doubt, the single most frightening experience of my life. I believed I would die that night, in that ER, surrounded by incompetence.

Sound like fun?

These are stories I've mostly forgotten until this minute. It's not that I've buried them, it's just that
they're not relevant anymore. Someone else reminded me of them a little while ago and I decided it
was time to tell this story, because it's not only my story, but the story of millions of others who are sick, and need answers.

In fact, I know of another Periodic Paralysis patient who did pass away in an ER from respiratory failure because the medical staff didn't recognize his inability to breathe on his own and he couldn't speak for himself. They simply didn't intubate him in time.
Careless. A senseless death. Why?
I grieve for his wife and 2 children.

                                          

Jump to Spring 2011 when I walked into my neurologist's office for the first time. I was finally referred to him by a cardiologist who saw me once in the hospital and noticed I was a lot weaker than I should be!

Wow! Imagine that...

So, this is what happened at that first appointment with my neurologist.
He asked me a lot of questions. And...
He listened to me. Then,

He examined me.
He tested my muscle strength--all the muscles in my body!
He tested all of my reflexes.
He asked me to walk...straight lines, backwards, sideways, etc.
He asked me to hold up my arms, my fingers, feet and toes.
He checked my eyes.
Get the idea?

Then he asked me more questions and  again, he listened to my answers.
He took lots of notes.
He ordered MRIs.
And he was kind to me.

I came back to see him the following week for an EMG, which is a painful test involving wires that are inserted into the muscles to test nerve function. I didn't care. We were getting somewhere. I was thankful. So thankful.

Then he sent me down to see another neurologist, his mentor at the University of Miami, for a follow-up evaluation and a second opinion.

FINALLY. Finally, I was being taken seriously. I was receiving the care and treatment I had been so desperate to find.

At UM, I was treated to a 2 hour appointment with the head of neurology, a genius of a man, and a wonderful human being. He also runs the MDA Clinic for the Greater Miami area. He has seen more muscle disease than most any other doctor on the planet. 

He began our appointment by telling me this:
"If I can't diagnose the problem, I don't have the right to assume a psychotropic reason for your symptoms."
I had to pinch myself!! Is he for real?!
This is the way he practices medicine. It's also the way he teaches his medical students, including my personal neurologist.
I just wish more doctors thought, practiced and taught this way.

Yes, it took patience and perseverance (and a lot of heartbreak!) to get the diagnosis I desperately needed. There were lots of months that I laid-low, giving up for a time. But I'd rise again, determined to find the help I needed...

I didn't even know how much those 7 years were preparing me for the struggle I would have against this thing called Periodic Paralysis.

My message to you?

Don't give up friends. Whatever you're dealing with, persevere! Stay with it. Your tenacity will pay off.
As always, I wish you the peace of Jesus Christ xx
Oh and
GO 'CANES!