I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007, and the diagnosis was changed to Essential Myoclonus. Then in 2010 I was diagnosed with Type II Diabetes. Finally, after a muscle biopsy, it was determined that I have Mitochondrial Myopathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

"But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

Saturday, November 03, 2012

Now THAT Was a Doctor Appointment!!

I can't praise my newest doctor enough. I had asked my Neurologist several months ago for a referral to a Nutritionist, since none of my doctors seemed willing or able to give direction to my own research on supplements and cofactors. Most Nutritionists offices I've found on the internet appear to be glorified weight-loss clinics, but this one is different. I'm sure that's why I had to wait so long for the appointment.

I finally had the appointment this week, and the dialogue with the doctor lasted TWO HOURS!! It was the most thorough question and answer period with a doctor I have ever had in my life. He asked many questions about lifestyle, medical history of mine and my family, my sleeping habits, spiritual values, as well as the obvious questions about my current eating habits.

He asked lots of questions about how my Mitochondrial Myopathy presents, how it is inherited, and all the issues I've had over the years that were misdiagnosed, but were obviously early manifestations of this disease.

He spent time explaining his approach to achieving maximum nutrition. Unlike my desperate visit to the herbalist, there was absolutely nothing mumbo jumbo in his philosophy, but he still obviously embraces much of the holistic approach to medicine.

For the first time since my diagnosis, I have now had a comprehensive blood panel testing for current levels of every imaginable vitamin and mineral, as well as more standard blood panel tests. He's also re-tested my heavy metal levels, as we live very near an EPA toxic site that is still being monitored. The phlebotomist took 14 tubes of blood!!

I see him again in two weeks, and we're looking forward to it. I am to keep a food log for the 7 days prior to the appointment.

In the meantime, he wants me to up my protein intake - and he made specific suggestions about what to eat more of, based on foods I had already indicated that I liked and ate. And he wants me to do chair yoga and meditation daily, practices I have previously only dabbled with.

But the most wonderful and hopeful part of this office visit was his request that I provide him with information, so he could do research on his own about Mitochondrial Myopathy!! I do carry with me in my "medical bag" a card from Mito Action that outlines information for clinicians, and of course that has their url on it. He was very pleased to get that as a start, and I'll be taking a list with us, and lots of printouts, when we see him again.

For the first time in a long time - we feel HOPE!


Anji said...

He sounds wonderful! I think that most good specialists appreciate patients who try to help themselves.

Early days yet... how are you feeling?

Dirty Butter said...

His visit has done wonders for my outlook. I am holding my own - doing so much better than a year+ ago.

We have to be doing some things right, but we want optimum help with minimum wasted money - don't want "expensive urine" as the expression goes. LOL

Anji said...

Just checking in to say hi.

It's been a month. I hope that you are continuing to feel positive and all is going as it should be.

Missy Leone said...

Haven't heard from you in while! Hope all is well!!