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Tuesday, June 10, 2014

80 percent only have "POSSIBLE" Mito

It was the annual Mito Conference this past weekend.

Kristi Wee's over at Baby(food)steps on facebook took notes and shared throughout the conference. A big thank you Kristi! I was able to feel plugged in and knowing that Kristi is quick on her feet I knew she would catch all those little nuggets of valuable data I love to hear about. She shared just the highlights of the data, enough to keep me entertained via google until the conference gets released.

The one bit of data that I keep repeating in my mind is one shared by Dr. Cohen,

#mito2014 Cohen estimates (in his patient population) 15% primary mitochondrial disease (genetic confirmation) 1% secondary and the rest (over 80%) are "possible" mitochondrial disease

15 percent of patients are primary.

1 percent secondary

and 80 percent "POSSIBLE"

So out of a 100 mito patients 84 of them could possibly have Mito or NOT.

Of course this is in reference to his patient load, but I would think he has a reasonably rounded representation of what most Mito Specialists handle.

By the time a patient ends up in a Mito Specialists office it is likely they have seen many other Specialists who have failed to be able to identify the disease process. So, if we have ruled everything else out, Suspected Mito it is. My question is, have they really ruled everything else out? Probably not. A Mito Specialist is just that, going to focus on Mito. In order to rule out everything else you have to find Specialists who specialize in everything else.

To me, Dr. Cohen's comment was TERRIFIC news. It means you might not have Mito- which is the best news you can get. No one in the right mind wants Mito or jumps to accept it. It about the most awful thing a Dr. can tell you.

Lucky you are if you are part of that 80 percent. Maybe you have another disorder that can be treated and/or cured.

Maybe by next year they will have sorted all those "possible" patients and those patients have found Specialists that might be able to help.

Or, maybe they will have found more definitive ways to diagnose Mito.

No gene, no absolutes, pretty good odds this year we have good reason to keep looking. Actually at 80 percent? We would be irresponsible not to keep looking.


Aliyanna said...

On many of the autism boards, mito is a topic of conversation. What we have found is that often times mito is a sub problem, so to speak...for many of our kids, the big picture comes in a body overload.
Many of our kids have heavy metal toxicities and candidia overgrowth and a buttload of gut issues and allergies. All of them seem to run together, as the heavy metals thru vaxes and other sources seem to be often a primary that manifests itself in a plethora of other symptoms. The big question is how to remove the problem and help the kiddoes get a better shot at life. Hard hard hard....esp when some of our kids have such profound "secondary issues".
Here hoping you find your key.....and we find ours.

Diane said...

Aliyanna, may we all find the key. My theory is that this spike in all chronic illnesses are due to toxins. From dementia to Mito to Autism etc the numbers of people effected are flying through the roof. I wonder how many of our children will be damaged before our society is finally willing to open their eyes? Not until it is their child. I am guilty of being blinded. I trusted the government. I trusted the vaccines, GMO's, fluoride in water etc. It wasn't until Abby got so ill and I finally looked around and saw the thousands falling that I was willing to believe we have done this to ourselves. I hope we can help Abby gain more back but my bigger wish is that we PREVENT this from happening to others. Doesn't look promising. Body Overload is right. We can only keep trying and keep moving forward. Sigh. But I do believe our bodies are meant to heal, we must simply get the barriers out of the way.

Clarissa said...

Abigail is in the "possible mito" group by default of not finding a genetic confirmation ... but the muscle biopsy did showed a mitochondria depletion... ? We have wondered if she could have something other than mito, but how do you even go about finding out when "everything" was ruled out early on..? So hard!

Diane said...

Clarissa, that is the big question. So many Drs. feel that there is something else going on, yet what? Will it turn out in 20 years they find another type of disease that is different then Mito but a lot like? Is it some rare oddball inborn error of metabolism just begging to be discovered? So many questions yet so very few answers. Isn't that something that both our Abbi/Abigails have the same diagnosis? It is a huge spectrum of symptoms. If I find the answer, I will be certain to scream it from the Mountain tops! :-) All we can do is keep asking the questions. Keep hoping and keep looking. In the meantime we live and love. Hugs!

Aliyanna said...

It took the drs over 20 yrs to figure out that I wasn't a hypochondriac and that whatI actually had was fibromyalgia and chronic fatigue syndrome and post traumatic stress disorder....nowdays it would be an obvious thing to find..... Oh wanna hear a funny....the CFS prolly was caused by a vax!!! And linked to the fact that I am Native American...which means a whole set of other issues.

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