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

Friday, January 13, 2012

Mitoland - A Guide for Mitochondrial Patients and Parents

I've been reading everything I can get my hands on about Mitochondrial Myopathy, and I've added several links to resources in the right sidebar.

But the best lay explanation of what's going on in Mitochondrial Diseases is a pdf from Cleveland Clinic called Mitoland.

I have the kind of Mitochondrial Disease that is caused by defects in the mtDNA, so it is 100% inherited from my mother. ALL mtDNA is inherited only from the mother. I'm an only child, but Mama would have inherited it from her mother, my grandmother. My mother was diagnosed with Parkinson's at one point and was diagnosed with Alzheimer's in later years. One of her brothers died of ALS, and her other brother died fairly young of a heart attack. Her mother, my great grandmother, died of cancer. I can't help but wonder if all these family members on my mother's side actually were exhibiting various manifestations of Mitochondrial Disease, as MITO is associated with all these diseases.

I'm sad to say that means I've passed some number of those defective mtDNA to our daughter, who has passed some number of them on to her three children. As I understand it, there's no way to know how much of the defective mtDNA has been passed along from one generation to the next, as that depends on the mtDNA makeup of the particular egg cell that was fertilized at the moment of conception.

6 comments:

babyfoodsteps said...

Good luck in your journey to find answer. We have been on this path for our little one now for about 3 years and still do not have a definitive answer whether it is mito or not...

Anji said...

I think it is the same with a lot of health problems that are passed on. It is only recently that these things could be diagnosed as inherited. Your Grandchildren will be in a better position to decide what to do about having a family as they get older and will be better informed all round.

In you previous post I see that you are already starting a plan of action. I do admire your fighting spirit. I'm sure that your blogging will be a great inspiration to others.

Dirty Butter said...

I'm sorry we've found each other because of MITO, but I look forward to reading your blog and hearing good news about all the great things you've found your little one can enjoy eating.

Dirty Butter said...

Knowing about this hopefully will encourage our daughter and grandchildren to take better care of themselves, too. These mtDNA flaws accumulate in all of us as we age, particularly if our lifestyle tends to do damage. That's why people born with relatively small mtDNA damage don't get symptoms until they are older. Children presenting with this disease have much worse symptoms.

Missy Leone said...

Will your kids and grandchildren get tested? Blood or swab?

Dirty Butter said...

Believe me that's on my mind all the time, Missy, and I'll be asking about that when I see my Neuro!! Do you have any signs that your MITO might be inherited?