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Wednesday, September 10, 2014

Drs HATE Mito like they HATE Pain. Mitochondrial Disease Awareness 2014

The big question is always- Why.

1) They cannot define it, label it, measure it.

2) They were not taught about it.

3) They have been taught Wrong.

If you go to a Dr. complaining about unrelenting fatigue and pain, or fatigue that comes and goes your Dr. will probably run the normal basic panels. If you are a female odds are they will check your thyroid(10,000 times) and if your basic bloodwork is normal give you a script for anti depressants because even though you don't feel depressed, you must be. If you have 10 pds to lose? That is to blame. If you have a husband and children? That is to blame.

If you go to the Dr as a teen girl complaining of fatigue and pain- you are just dramatic. Blood work looks pretty normal? IT is the parents fault for "indulging" the teen girl drama. I remember Abby fainting at school and no one calling and telling her to get over it. Throwing massive protein and blood, but she needed to get over it. Abby even had medical documentation since birth of muscular issues - even then, the advice repeatedly was to "push" her, and ignore it. That robbed her body of years.

Good luck getting a referral. At best you may get referred to the Rheumy, who will likely run a blood panel and assure you that nothing is wrong and to get more exercise, maybe more of those anti depressants, because fatigue and pain if not measured in labs MUST be depression.

You might even get a referral to a Mito Specialist(after you spend a year finding a specialist that will see you, get on a massive wait list..) and some may not be as helpful as you had hoped.

OF course after a few years of being told you CANNOT feel that bad because your labs are fine, you do start to wonder if you should take those depression pills. Some of those anti depressants can cause Mito dysfunction, so you might end up even worse.

Until an effort is made to teach Drs. in Med School, until the Medical Associations prioritize Mito Education your Dr. won't understand Mito, and what a Dr. doesn't understand and cannot quantify with that basic CBC, odds are the Dr. doesn't believe.

Remember in the 80's when Chronic Fatigue was first defined ? Drs and patients laughed! IT was ludicrous to think you could have an undefined disorder with no specific lab tests and call it a disease. I remember very clearly a Dr. calling it a guise for lazy. Today we know it is a REAL disease that needs specialized care that the patients are hardly lazy.

You might have a Dr. that knows a little about Mito, but usually it is about the profoundly disabled spectrum. Which means if you have a mild presentation you will be told it is "impossible" you have that, or your Mito Disease Specialist was wrong. (been there with Abby) I have heard patients with profoundly disabled children told by many Drs. that it isn't Mito. A local Dr. may refuse to even accept the findings of an out of State Dr, they won't even bother to look the Mito Specialist up to see if they are a licensed Specialist in good standing. It can be a real war zone out there to get any Dr. to believe you let alone "want" to help you.

So, you ask yourself, "Is Mito real?" My Drs don't seem to think so.

There are plenty of open minded Drs however. Abby has a number of them that admit this is their first Mito patient. Or admit they had no idea an adult could have Mito. Or that they had no idea Mito could be milder and not terminal in childhood. A lot of Abby's Drs do a good job not judging, or working in partnership with her and I.

Until Drs. are taught and believe that Mito is real, there will be no awareness.

Our Society in general feels that anything to do with healthcare is best advocated for by Medical Specialists. Medical Professionals will not advocate for a disease they either don't recognize or don't believe is real, I don't blame them. We have been taught by so many Drs. that if doesn't show up on that basic blood panel, it cannot be real. Like pain, it can be very difficult. Pain can cause a patient to be completely disabled. Pain is individual, there are few tests that can "prove" a patient isn't lying about their pain or if the pain is acknowledged, odds are it is assumed the patient is exaggerating.(all patients are assumed to be lying about pain FYI) The testing used for Mito is complex. Much comes down to how it is read by any given Specialist. Even a genetic mutation is questioned because you can have a genetic mutation for a disease and not develop the disease.

Drs. depend on tests. On proof. On absolute Science. If it isn't in that lab report, it isn't real.

I appreciate the need for scientific proof, after all if I don't have cancer I don't want to be treated for cancer.

We know that patients with untreated pain suffer physical consequences.They can develop secondary health issues from the chronic pain. Same thing with Mito patients, ignoring their health complaints or covering them with anti depressants isn't going to make them go away. They will get sicker and sicker. Probably would have been easier to listen in the first place, right?

So as Mito Awareness week approaches, be gentle with other Mito Patients. Each patient advocates as best they can. Most struggle to get out of bed daily let alone organize a fundraiser. Most use every available spare dollar in their household budget to cover medical care,medications and safe food. Most struggle to feed themselves let alone show up for a lengthy walk. Most struggle to even find a Dr. that has heard of Mito let alone find the energy to sell Mito junk for fundraisers. Many are working hard to live their lives fully without spending any more of their precious energy on Mito.

We should however be looking to our Drs. to advocate for Mito. For Drs. to teach their peers. For Drs. to teach Mito in Medical Schools. For Drs. to accept that like pain, often Mito cannot be measured by that CBC blood panel. Sometimes even a science based field like medicine, needs to have a little faith and put the patient before the CBC.

Lastly, Thank your Mitochondrial Disease Specialist. If Drs. as a whole think patients are nuts for believing in Mito, just imagine what they think about the Specialists who work so hard to provide us a better quality of life. (Same goes for those Chronic Pain Drs- they go through HELL with Federal government daily to provide you with pain relief,at great personal expense.)


Laura said...

Look what is happening to children because some doctors do not "believe" in mito. Justina, those two little girls in AZ, the boy in Illinois.... They are being tortured and destroyed.

Diane said...

YEs! And if you figure that maybe only 1 in a THOUSAND is courageous and brave enough to speak out against the Drs. and Government that would steal their children to silence them, well that means thousands of our American children and families are being tortured- simply because they suffer from a disease Drs. refuse to educate themselves about or believe.

Clarissa said...

It's so sad!! This is a great article, Diane, thanks for writing it! Even for our Abi, disabled/delayed, but not SICK as an infant.. doctors told us "no way she has mito!"... I was told I was a BAD mom for wanting to test for mito (putting Abi through things she didn't need, etc.)... the one doctor later apologized to me after Abigail was diagnosed with mito! Can I share this on my facebook page? http://facebook.com/clarissarwest

Clarissa said...

Actually, do I have permission to share other posts of yours on my facebook for mito awareness, as well? thanks!

Diane said...

You are always welcome to share any of my posts. Once they are on the blog they are public. Ty for asking though. :-) Sorry you too went through the "Drs who hate Mito" ... sigh. Big hugs to you and your Abi.

Clarissa said...

Thank you!

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