Brain Fog

One aspect of mitochondrial disease and the effects that wears me out the most, is brain fog.  There are some days I spend the entire day just spinning my wheels going in circles, days where nothing I try to do gets done or else it’s not done according to the way I would normally do it.  At best, these days can be a blur and at their worst I forget them all together.  I recently saw a posting on a social media related to this, and the caption was about some new study and drug advancement.  The lead statement was basically “tired of losing things and trying to find them”.  I responded to the post, trying to be funny but serious at the same time when I said, “losing something yes, but more often than not, after five minutes, I don’t even remember having it or looking for it to begin with, so it’s alright”.

Anyway, I saw a video this morning and thought it was a good take on brain fog so I am sharing it with you all.

Chronic Illness on The Mighty

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I’ve been through a lot since I first started this website but over the winter I had several issues that kept me from posting regularly.  This is not something I want going forward and as a survivor of Mito it is bound to happen from time to time.  I will not be able to keep things going like I might like to do to this diease.  So I am looking for some like minded individuals to help contribute on the site with me.  If interested in contributing on Mitochondrial disease then visit me on facebook or email me directly at thomaswormsley@outlook.com. Thanks in advance for those looking to get involved

I am just so stressed out

I am just so stressed out, just common words often said or heard on a daily basis. The world is a bit of a cruel place in that regards with its hustle and bustle it can keep even the best a little stressed out at times. So when you add Mitochondrial disease into this mix your added with a new set of hurtles to jump over. You want to talk about being stressed out to the max but wait here’s more. Stress is the one component that Mito patients should not have because it can factor into more suffering.

In a section one the website of United Mitochondrial disease foundation (UMDF) Treatments & Therapies. it states this

Avoidance of Physiologic Stress

Physiologic stress is triggered by external factors that may result in worsening the metabolic situation, which may result in temporary or permanent worsening of the condition. It is impossible to avoid all physiologic stressful conditions, so one should not attempt to do so. However, recognizing what may be stressful for patients allows one to adjust the lifestyle. Many patients and their parents have already identified these stresses, despite not knowing why the stresses were important, and avoid them.

Cold Stress is extremely important. Thermal regulation (temperature control) is not always normal in people with mitochondrial diseases and exposure to cold can result in severe heat loss and trigger an energy crisis. When going out into the cold, all exposed body parts should be covered, and exposure to extreme cold should be avoided for anything more than a short period. Over bundling can be a problem too (see below).

Heat Stress can be a problem in some people. This is especially true of those with an inability to sweat normally. Heat exhaustion and heat stroke may occur on hot days. It is typical for parents to describe that their child seems to “wilt” in situations like hot classrooms or direct sunlight, whereas the other children function normally. Light clothing is important. Patients should avoid direct sunlight on hot days and stay indoors if it is too warm outside. An air-conditioned environment may be needed.

So what is to most just the way it is (stress) to us is actually harmful causing more symptoms. They say stress can cause physical problems in a persons life and this is true we know it all to well. That coupled with what we have to go through since this illness is invisible to the naked eye. How many times have you heard but you looks good after talking about your disease. I can only say God bless the ignorance because they know not what they do. It does make it worse harder on us when treated this way.

I wish there was a cure or remedy here but the truth is there isn’t but maybe the just know it ourselves can take a little of the sting out. We can not walk around in glass bubbles in avoidance of stress but maybe if we just think about it slightly from the angle of its causes we can recognize it and thus avoid it ourselves.

Sleep It often eludes me

Sleep Disorders and Mitochondrial Disease

There are about ten accepted sleep disorders as found in the DSM 5 Diagnostic and Statistical Manual of Mental Disorders (DSM) which had made several significant changes in both the classification and diagnostic criteria for many of the sleep-wake disorders. . The DSM-5 sleep-wake disorders category now encompasses 10 disorders or disorder groups, including insomnia disorder, hyper-somnolence disorder, narcolepsy disorder, breathing related sleep disorders, circadian rhythm sleep-wake disorder, non-REM sleep arousal disorder, nightmare disorder, REM sleep behavior disorder, restless leg syndrome, substance/medication induced sleep disorder.

Mitochondrial disease we our mainly dealing with breathing related disorders, movement disorders such as restless leg syndrome, circadian rhythm disorder, hypersomnia excessive sleep like narcolepsy and other conditions, parasomnia which refers to abnormal sleep behaviors like night terrors or sleep walking, REM behavior disorders and seizure related disorders. This last not being on the DSM5’s list but most definitely in Mito’s list of sleep disorders. There is a page on MitoAction.org   where on March 4, 2011 Dr.Matthew Weiss spoke about sleep disorders and mitochondrial disease. I am also linking the Pod cast here as well Weiss Pod Cast for those wanting to listen in to the topic.

For me sleeping disorder comes in the form of Sleep Apnea and Insomnia. I am not going to take you through all the medical technical parts but just say those are my sleep disorder issues. I go to bed each night around ten to eleven which I admit maybe a little late compared to when I get up each day. I am always up by but mainly before six each morning. I have a lot of things I do each morning and this mean I need to be up and going each and everyday seven days a week. But with Mito and sleeping disorders I can now be up anytime. It doesn’t matter what prescriptions I try to take when I wake up that’s it I am up. I have spent to many night having just gone to bed only to wake up at one o’clock and be up there staring at the screen of my computer.

Here’s the part I know you want to come next but the truth is at the moment there is no real relief that I can find. It’s not inherit to all Mito patients just the ones who suffer from it. Though that number does seem to be a large enough statistic as to say its one of the common symptoms. The Journal of Clinic Sleep Medicine in a currant issue on Sleep Disorders Associated with Primary Mitochondrial Diseases stated their conclusion of the problem as. “Sleep pathology may be an underreported complication of primary mitochondrial diseases. The probable underlying mechanism is cellular energy failure causing both central neurological and peripheral neuromuscular degenerative changes that commonly present as central sleep apnea and poor ventilatory response to hypercapnia. Increased recognition of the genetics and clinical manifestations of mitochondrial diseases by sleep researchers and clinicians is important in the evaluation and treatment of all patients with sleep disturbances. Prospective population-based studies are required to determine the true prevalence of mitochondrial energy failure in subjects with sleep disorders, and conversely, of individuals with primary mitochondrial diseases and sleep pathology”. So we just mainly come back to the Mitochondria and ATP or our energy deficiencies.

 

Headaches my daily pain

I’ve been up since three this morning with a debilitating headache. I have had a headache everyday since this whole thing began back in march of last year and at one point before I was diagnosed I requested an MRI of my brain in fear that my whole problem was something in my head and not that conversion disorder a few Specialist I saw suggested.
My headaches feel like a pressure from the center of my brain pushing against the back of my eyes which cause them to water at times when the pain is great. After a very strong headache my vision and eyes in general are fatigued. This was yet another symptoms I had that early on the Specialist would just shrug their shoulders.
This is one thing I can say for sure throughout my experience my Primary Doctor has been the only one trying to be of any real help. I am so very thankful to him for his patience and kindness Doctor Paul Moniz.

I read some interesting facts on MitoAction about headaches. I will re-post the main paragraph here but the link about is to the whole article.

Headache

Patients with mitochondrial disease experience a variety of headache types, including migraine. Other than pain, symptoms include nausea, sometimes severe vomiting (enough to cause dehydration), photophobia and phonophobia, and occasionally an aura. Patients may have lower trigger thresholds and require more aggressive treatment than routine headache-sufferers. Common triggering agents include excessive activity and exhaustion, dehydration or underhydration, and undernutrition with poor calorie intake, or any combination of the above. Patients with energy disorders are at risk for developing obstructive and central sleep apnea; each can reduce the quality of sleep, leaving patients with significant day-time fatigue and at risk for developing headaches.

Looking for a cure

A cure may be on its way through stem cell research being done probably as I write this article I am sure. But for those of us caught up in this rat race feeling like the guinea pig of the medical machine what are we to do now. A cure for the future will be great and I don’t want to steal away any mad scientist’s accolades. But the truth is we are here now suffering without much reprieve.

A change in diet a handful of supplements and on you go. Now keep your chin up it could be worst, it can always be worse. Oh yes and we can never forget the I’ll see you again in 2, 6 or even 12 months from now but do call if something changes. But let’s not bring up that conversation of how their phones lines are all automated now and you will be luck to get a call back in a couple of day.

Please do not miss read me here because I do not believe these things are the doctors faults entirely. For one they didn’t give us this disease, but two the bureaucratic machine though now that beast we can blame for anything. Its what ties the Doctors hands really but I digress.

Looking for a cure that was are topic to which I am posting just a brief snippet from a website I have devoted a page to on my site. Oxygen Oasis Health by a friend and author. In it the author describes Six Pillars To Mito Health. I am still making my way through the reading but if the entirety is half as good as just the first part its a must read. The section call about the creator read that first and then if that doesn’t spark your interests well then you died and no need to read anything ha-ha.

First Pillar: Energy Conservation

What happens when you run out of “juice”?  Regardless of your energy source, if you use it all up, everything stops functioning.  Your body is no different.

At any given moment we each have an energy requirement that must be met through sufficient production of ATP.  Just as a battery becomes weak and the device begins to struggle to function until it simply can’t function anymore, so does our body when our energy demand begins to exceed what we are capable of producing.

Overexertion is dangerous; both over time and in some intense situations it can even become deadly.  In the 24/7 stress of the hustle and bustle of today’s busy world, it is difficult not to burn the candle at both ends.  Whether one is facing health issues or not, this is not a healthy lifestyle.  When the body is functioning well, one might feel minor symptoms of fatigue or brain fog but tend not to feel the full impact of the physical, mental and emotional stress being applied.  However, those struggling with health issues, even just the common cold, will quickly realize the energy draining effect of even the most minor of tasks.

Superfoods And Their Dietary Benefits

Since I’ve been diagnosed with Mitochondrial Disease one of the key issue I keep seeing over and over again is nutrition and dietary needs. How eating healthy can increase you bodies ability to easy your mito. The term Superfoods has been used over and over again on many web pages but most well pretty much all I looked at just never went into any detail on what these were.

Well that changed for me today when I happened on a website offering a free ebook. The book is Superfoods by Dr Joseph Mercola. and in it the author give a top 10 list of his favorite Superfoods. Which I will share with you here,

1. Kale (Borecole)

Probably one of the healthiest leafy green
vegetables you can munch on, kale has been
around since the Roman times. Because kale is
very easy to grow and even thrives during the
cold winter season, its cultivation was highly
encouraged in the United Kingdom by the Dig
Victory campaign during World War II. iv

Some of the more popular varieties of kale include curly kale, Lacianto kale (dino kale),
red Russian kale, redbor kale, and Siberian kale. There are countless ways to enjoy
kale. You can cut the smaller, paler green leaves to anchor or mix into fresh garden
salad, while the larger, dark greens are great for stir-fries, pizza topping, or soup. You
can even indulge in guilt-free kale chips!

What Makes It a Superfood?

A single cup of kale can trump a whole week’s worth of other foods as it contains:

• 684 percent of the daily value of vitamin K
• 206 percent of the suggested daily amount of vitamin A
• 134 percent of vitamin C (and even more vitamin C in the Scottish curly-leaf
variety)

Kale has been compared to beef, which is known as a “go-to” food for iron, protein, and
calcium. It has anti-inflammatory properties linked to the prevention and reversal of
certain diseases, which includes arthritis, heart disease, and several autoimmune
diseases, at levels not seen in other green vegetables.

2. Tomato (Lycopersicon esculentum P. Miller)

A member of the nightshade family, the first species
of tomato plants originated in the South American
Andes, although its use as a food was initiated by the
Mexicans and was spread all throughout the world
during the Spanish colonization. v

There are over a hundred of varieties of tomato – tiny types like grape, plum, and cherry
for snacking pleasure; firm, petite Romas good for cooking; and hefty beefsteak, ideal
for BLTs and burgers. These plump mouthwatering superfoods can be used in many
ways: sun-dried, fried green, stew, sauce, paste, ketchup, juice, Bruschetta, veggie
soup, pizza, salsa, salad… the list goes on and on.

What Makes It a Superfood?

Tomatoes are rich in flavonoids and other phytochemicals that have anti-carcinogenic
properties. One of them is lycopene, a carotenoid antioxidant that gives fruits and
vegetables like tomatoes and watermelons a pink or red color. More powerful than other
carotenoids, lycopene may significantly reduce your risk of stroke and prostate cancer.

Other lesser known phytonutrients found in tomatoes include:

• Flavonols: rutin, kaempferol, and quercetin
• Flavonones: naringenin and chalconaringenin
• Hydroxycinnamic acids: caffeic acid, ferulic acid, and coumaric acid
• Glycosides: esculeoside A
• Fatty acid derivatives: 9-oxo-octadecadienoic acid

In daily value, tomatoes provide 38 percent vitamin C, 30 percent vitamin A, and 18
percent vitamin K – minus the fat and cholesterol.

3. Artichoke (Cynara scolymus)

Artichoke is a perennial thistle and is a member of the
sunflower family of vegetables. First cultivated in the
Mediterranean region, artichokes became scarce
after the fall of the Roman Empire. They made a
comeback in Italy in the 1500s, and then appeared in
the Americas after introduction by French and
Spanish gardeners. As of today, California is the
largest producer of artichokes in the US.

Some popular types and varieties of artichokes include:

• Globe artichokes
• Elongated artichokes
• Purple baby anzio
• Oblong siena
• Fiesole artichoke
• Chianti

Artichokes can either be steamed and served with a dipping sauce, stuffed with all kinds
of savory ingredients like vegetables, lightly steamed then grilled, mixed into salads,
and added in stews and other hot dishes.

What Makes It a Superfood?

Artichokes are a good source of fiber, as it supplies at least 28 percent of the
recommended daily value. Aside from helping you move waste out of your system
regularly, fiber can help also:

• Lower blood sugar and blood pressure levels
• Prevent inflammation and protect heart health
• Reduce your lipoprotein or “bad” cholesterol levels
The cynarin in artichokes increases bile production in your liver, which in turn eliminate
bad cholesterol from your body. It also offers 25 percent of the daily requirement of
vitamin C, or ascorbic acid, which provides antioxidant action to protect cells from
damaging free radicals. Vitamin C also supplies collagen to help wounds heal quickly
and protects the body from disease by helping it absorb iron.

4. Acai berries (Euterpe oleracea)

Acai (pronounced ah-sigh-ee) berries looks like an
offspring of a grape and a blueberry with a taste
reminiscent of wild berries and chocolate. These tiny,
reddish-purple drupes consist of a cluster of seeds,
with only 15 percent or so being edible. Native to
South America, acai berries are harvested from the
tall, slender palm trees found at the basin of the
Amazon River.

Although acai berries can be found in large supermarkets and health food stores around
the globe, they’re only available as a juice or tea rather than fresh fruits. Because
they’re highly perishable, getting acai berries out of the Amazon with their nutrients still
intact is nearly impossible.

As a food, acai pulp in the tribal Amazon belt is often blended with the starchy root
vegetable manioc and eaten as porridge.

What Makes It a Superfood?

Acai is known for its extraordinary antioxidant properties similar to cranberries, but
many times more than what is found in blueberries and strawberries. As a matter of fact,
the Oxygen Radical Absorbance Capacity (ORAC) values measuring the antioxidant
power of acai fruit pulp/skin powder reportedly have the highest ORAC value among
fruits and vegetables, or 10 times more antioxidants than red grapes.

This is why it’s not surprising to find that acai berries may help treat:
Diarrhea                                                               Parasitic infections
Hemorrhages                                                     Ulcers
Erectile dysfunction                                         Inflammation
Arthritis                                                               Allergies

Acai berries are low in fructose, but contain excellent amounts of iron, calcium, fiber,
and vitamin A. They also contain anthocyanin compounds, such as resveratrol,
cyaniding, and ferulic acid, which not only give fruits and vegetables their distinct color,
but also team up with flavonoids to defend your body against harmful free radicals. In
fact, acai berries offer 10 to 30 times more anthocyanin power than red wine.

5. Broccoli (Brassica)

Broccoli is perhaps the most popular member of the
cruciferous group of vegetables. The word “broccoli”
means “branch” or “arm” for the cross-shaped stems,
like mini trees bearing the blossoms.

A valuable vegetable that’s loved by the ancient
Romans, broccoli once grew wild on the shores of the
Mediterranean Sea. Its use can be traced to 16th
century France and England in the 1700s, with commercial growth beginning in the US
in the 1920s.

While there are many ways to prepare and enjoy this superfood – it can be steamed,
roasted, baked, sautéed, or stir-fried – broccoli is best eaten raw, as cooking tends to
destroy some of its antioxidant components.

What Makes It a Superfood?

Broccoli has twice the vitamin C of an orange, almost as much calcium as whole milk
(with a better rate of absorption), and offers anti-cancer and anti-viral properties with its
selenium content. Just one cup of broccoli provides over 100 percent of your daily need
for vitamin C and vitamin K, and is also a good source of vitamin A, folate, and
potassium.

Some of the most sought-after health benefits of broccoli include: vi,vii

• Anti-cancer
• Anti-inflammatory
• Improved digestion and natural detoxification
• Cardiovascular support
• Protection from chronic diseases
• Enhanced bone health

6. Cucumber (Cucumis sativus)

Considered the most widely cultivated vegetable in
the world, cucumber is technically a fruit from the
Cucurbitaceae family of gourds, alongside different
varieties of pumpkins and melons. Cucumber offers a
refreshing flavor that blends beautifully with other
fruits and vegetables.

It originated in the Mediterranean and was brought to
the Americas by European explorers in the 1500s. There are dozens of cucumber
varieties thriving in both cool and warm climates, but three of the most prevalent ones
are slicing, pickling, and burpless.

To get cucumbers into your diet, you can try pickling them or adding them to your
salads, juices, and other cooked recipes. Infusing your water with slices of cucumber is
another must-try.

What Makes It a Superfood?

Grown wild throughout India, cucumbers are used as a traditional medicine to treat
headaches. The seeds have found a niche as a diuretic, and the juice is used as an
acne cream and a soothing remedy for tired, puffy eyes. These early uses led scientists
to investigate cucumber fruit, seeds, and extracts as an effective treatment in other
areas of medicine.

Although it’s actually 90 percent water, cucumber doesn’t skimp on nutritional value. It’s
an excellent source of:

• Anti-inflammatory vitamin K
• Infection-fighting vitamin C
• Energy-producing pantothenic acid (vitamin B5)
• Bone-building manganese
• Heart-healthy potassium and magnesium

Recent studies also reveal that cucumbers also have lignans, the unique polyphenols in
crucifers and alliums, such as cabbage and onions, known to lower heart disease risk.
In cucumbers, these powerful lignans bind with estrogen-related bacteria in the
digestive tract, contributing to a reduced risk of several cancers, including breast,
uterus, ovarian, and prostate cancers. Other phytonutrients in cucumbers called
cucurbitacins – part of a larger group known as triterpenes – are also known to strongly
inhibit cancer cell development.

7. Avocado (Persea Americana)

Avocado is a cousin to cinnamon, camphor, bay
laurel, and other members of the Lauraceae family.
Spanish conquistadors had their own historian,
Oviedo, who reported positively about avocados
discovered in Mexico around 1519. But this
interesting fruit has graced Central and South
America for perhaps 10,000 years, according to the
avocado-inspired drawings and artifacts found in
early Aztec settlements.

A judge from Santa Barbara took the first Mexican avocado trees to California in 1871.
California now grows 90 percent of the US avocado crop in more than 6,000 groves.

What Makes It a Superfood?

When it comes to nutrition, avocados are a different breed, because of the
extraordinarily huge quantity of benefits they offer. Loaded with fiber, a single avocado
contains:

• 36 percent of the daily requirement for vitamin K
• 30 percent for the folate
• 20 percent each of the daily requirements for vitamins B5, B6, C, and potassium

More importantly, avocado is one of the few fruits that will provide you with “good” fats,
which means it can help keep your cholesterol levels already in the healthy range and
help lower your risk for heart disease.

8. Sprouts

Sprouts are the edible germinated seeds of flowers,
beans, legumes, vegetables, or grains. Sprouts
deserve to be called a superfood not only because
they can be grown effortlessly and inexpensively, but
also because they contain exceptional amounts of
vitamins and minerals, sometimes way beyond what
a mature plant can offer.

This is because when sprouting seeds, nuts, beans, and grains you get:

• Higher amounts of vitamins and enzymes
• Increased essential fatty acid and fiber content
• Increased bioavailability of minerals and protein

A rising superstar in the raw food community, sprouts are typically eaten raw and added
in salads, juices, sandwiches, and other recipes.

What Makes It a Superfood?

Despite their size, sprouts should never be underestimated. These little edibles are a
powerhouse of nutrients. For instance, sunflower sprouts and pea shoots are known to
be up to 30 times more nutritious compared to organic vegetables.

Here are a few more sprout options you can choose from and some of the nutrients they
have in store for you:

• Alfalfa – vitamins A, B, C, D, E, F, and K
• Wheatgrass – vitamins B, C, and E
• Mung bean – protein, fiber, and vitamins C and A
• Lentil sprouts – 26 percent protein and can be eaten without cooking
• Brussels sprouts – fiber, manganese, potassium, choline, B vitamins,
antioxidants, and other health-promoting phytochemicals

9. Coconut Oil

Coconut oil is the edible oil extracted from the white
meat of mature coconuts. It is most commonly used
in many tropical countries, particularly in India, Sri
Lanka, Thailand, and the Philippines, where coconut
trees thrive well. Because of the coconut’s
innumerable health and wellness boons, coconut oil
and other coconut products, such as coconut water,
are gaining popularity in the West.

Aside from being an ideal oil to use in all forms of cooking and baking (because it can
withstand high temperatures without being damaged like many other oils), coconut oil
can also be drizzled over salads, added in coffee or vegetable juices, or taken as is
once or twice daily.

What Makes It a Superfood?

Coconut oil is an ideal replacement for non-vegetable carbohydrates, because it is
comprised of medium-chain fatty acids (MCFAs) that are easily digested and readily
cross cell membranes. These MCFAs are immediately converted by your liver into
energy rather than being stored as fat.

Coconut oil also has potent antimicrobial properties, which make it a powerful destroyer
of all kinds of microbes, from viruses, to bacteria, to protozoa. Coconut oil also helps:

• Promote heart health
• Support proper thyroid function
• Promote healthy brain function
• Strengthen your immune system
• Provide an excellent “fuel” for your body
• Support a strong metabolism that can aid in weight loss
• Maintain healthy and youthful looking skin

10.Homemade Bone Broth

Bone broth is made with bones and sometimes a
small amount of meat adhering to the bones of
different kinds of animal meat – whether it’s beef,
pork, chicken, or fish. It’s typically simmered for a
significant period of time, which can sometimes even
go beyond as 24 hours, to produce a gelatinous soup.
Basically, the more gelatinous the bone broth, the
more nourishing it tends to be. The collagen that
leaches out of the bones when slow-cooked is one of
the key ingredients that make broth so healing.

A timeless superfood, according to Dr. Kaayla Daniel, vice president of the Weston A.
Price Foundation and co-author (with Sally Fallon Morell) of the book Nourishing Broth,
bone broth goes back to the Stone Age, when they were actually cooking broth in turtle
shells and in skins over the fire. The great Greek physician Hippocrates was also known
to be a big believer in its benefits.

Today, Los Angeles Lakers player Kobe Bryant is among those who swear by bone
broth and who believes it has kept his NBA career sustainable, having it as a foundation
of his pre-game meals. “I’ve been doing the bone broth for a while now. It’s great [for]
energy and inflammation. It’s great,” the NBA star reportedly said in one of his
interviews with ESPN.

What Makes It a Superfood?

Bone broth contains a variety of valuable nutrients of which many Americans are usually
lacking, in a form your body can easily absorb and use, such as:

• Calcium, phosphorus, and other minerals
• Components of collagen and cartilage
• Silicon and other trace minerals
• Components of bone and bone marrow
• Glucosamine and chondroitin sulfate
• The “conditionally essential” amino acids proline, glycine, and glutamine

Still not convinced? These additional health perks brought by bone broth might change
your mind:

• Reduces joint pain and inflammation
• Inhibits infection caused by cold and flu viruses
• Fights inflammation
• Promotes strong, healthy bones
• Promotes healthy hair and nail growth

New Facebook Group and Page

Adult Mitochondrial Disease Group

The group is an open public group for now where you can share your experiences, thought and feeling about adult Mito. Its a place where you are welcome to speak freely about the disease how it effects your life and what you done and been through. It is also a sounding board to bounce thought about the disease off other Adult Mito patients.

Adult Mitochondrial Disease Page

The Adult Mito Page is where I will comb the internet for relevant info on Adult Mito especially late onset. These topic and content will them be open for discussion and commenting as well especially if its something note worthy and even if its something the communities feels negatively about.

Both of these social media site are for you it is our place together share and learn. When I was diagnosed very little information was given to me by my Doctor. To be quite honest no information was given only that I should take one OTC Coenzyme Q10 tablet a day. I now know I need much much more than a 100mg’s a day  but you would have to refer back to my other post on Choosing The Right Doctor. We must advocate for ourselves here the disease is just to complex to let someone fumble around on us as they try to learn themselves.

 

 

Choosing The Right Doctor

The question of choosing the right Doctor is like the age old cart before the horse or which came first the egg or the chicken. Doctors are very complex persons to begin with and once we start to draw closer to a diagnosis of Adult Mito we will need more and more to be with one that knows the stuff. This can make it very difficult on several fronts and lead to more than just a little stress. Which is something that is not in our best interest at all.

For me this whole business with Doctor’s has been very stressful which has also made me very sick at times. I awake this morning feeling very poorly after spending the whole day on the phone with varies people and groups trying to deal with the out come of my latest Doctor’s actions. I had the muscle biopsy done on my upper thigh three months ago. Those original results had been brought into question by the Mayo Clinic. This caused the original Pathologist to restudy the biopsy and found Mitochondrial Myopathy as the outcome.

This is where the story really begins and the reason you must be your own advocate in you health care. The next step after a biopsy find of Mito should be to get to a Doctor trained in this. You can get help through United Mitochondrial Disease Foundation in finding a Mito trained Doctors in your area. This is my opinion but this is very important a doctor who lacks training and understanding of the Mitochondrial Disease can be more harmful than good. Their approach though thought in your best interest may not be the right one.

Let’s take for instance my situation which maybe an extreme case though. My muscle biopsy report written by the pathologist who examined the muscle tissue stated in several lines of comment that finding for Mitochondrial Myopathy was found that there were abnormalities in the Mitochondria which is indicative of Mitochondrial Myopathies. Now first off Pathologist’s do not diagnose you they report their finding to the referring Doctor who then reads their referrals and make a diagnosis. Well at least that is how it should work.

My Doctor told me I had Mitochondrial Myopathy and when questioned. Is this the diagnosis since I need a diagnosis to apply for disability since I have been unable to work since I took ill over a year and a half ago? He stated yes I could file for disability for Mitochondrial Myopathy. You would think the problem is resolved right and this is where you must advocate for yourself because no on and I mean no one is going to look out for you better than you. Ask for the finding and diagnosis in writing that day that minute.

I walked out of that office not questioning what was said to me and proceeded on which has brought me a lot of headaches. The next thing my Doctor tried to get done which I thought was a good thing was to have a Genome test preformed I hope that is the right way to say that. He put in for a test and this was based on a statement in the pathologist report. “The biopsy can be sent for mitochondrial mutation analysis if clinical indicated and approved.” what this statement means is there are additional test that can be preformed if medically necessary to further define the Mitochondrial Myopathy.

I didn’t know this and I am pretty sure my Doctor didn’t either since the first test he requested a DNA test was denied immediately. He appealed the insurances decision only for me to find out midway into the appeal he changed his mind and realized he had asked for the wrong test. He then asked for another which was supposed to be the correct one which was denied as well on the bases of medical need. The insurance found no bases for any further testing to be done after diagnosis. Mitochondrial Myopathy has no cure and the treatment for Mitochondrial disease is pretty generic across the board only differing on a patient by patient bases. This is where my Doctor should have know his limitation but also where we need to advocate for ourselves as well and move on to someone who does.

It can be a hard decision to make and often one you will have to make but once you have an idea that Mitochondria is part of your illness move onto a Doctor who specializes in this disease because the  ones that don’t will just be guessing and making more headaches for you as you watch them flounder along. My Doctor asked for the DNA testing to prove the biopsy find an incorrect approach since the biopsy finding did not need to be proved only expounded on. It is also these note of his that show a lack of understanding as to what I have that the disability people will see and question the diagnosis based on his medial notes. That is my fault always ask for writing when dealing with these rare diseases because after you leave it is simply your word against what you thought was said you have no proof of what was said.

My Mitochondrial Disease Symptoms

First off let me start by saying forgive me on the length of this post. It is very long and for that I am sorry. When I first starting researching Mitochondrial Myopathy I wasn’t able to find what I was looking for a brass tax on the symptoms experienced by a middle aged adult with sudden onset. So I felt like I had no real way of know if how I felt was related or was it something else. Thus the reason for the length of this post I want to tough on each symptoms as best I can so that the next person maybe able to find help here.

The symptoms of mitochondrial myopathies include muscle weakness or exercise intolerance, heart failure or rhythm disturbances, dementia, movement disorders, stroke-like episodes, deafness, blindness, droopy eyelids, limited mobility of the eyes, vomiting, and seizures.

For me, my symptoms have included several facets of these seen in the featured image but also in the previous paragraph. For starts let me say I am a 44 year old white male living in Missouri. So that gives my background as to who I am before I became an Adult Mito patient. I was diagnosed through a muscle biopsy after spending over a year sick to the point of not being able to work or just live my life.

I will start with the Nervous system and the effects the disease has placed on my life regarding these. As I sit here writing this I am dealing with general to acute nerve pain caused by the disease in the form of nerve damage done. It it this pain that bothers me very much unlike muscle pain that you can at least be understand.

My nerve pain

Autonomic:                                     Motor Nerves:                  Sensory Pain

  • Lightheadedness                      * Weakness                         * Pain
  • Dry eyes and mouth                * Muscle atrophy               * Sensitivity
  • Constipation                                                                              * Numbness
  • Bladder dysfunction                                                                * Tingling
  • Sexual dysfunction                                                                  * Burning

My eyes are the second in my list especially since I receive a lot of difficulty here. I will see an eye doctor in the coming week for the weakness I am experiencing. I have blurry vision and double visions at times. My dry scratchy eyes drive me crazy beyond words. Also my weakness at sight in the dark. These are just the top without having seen a Doctor yet and also the possibility of drooping eye lids something I fear is going on also.

My heart has to be the next on this list, in the early stages of trying to figure out what I was going through. My Primary Physician wanted to rule out heart attack and the likes. I do have a bit of family history with both my Father 55 and his father 60+ having died of heart attacks and my Dad’s brother having a massive heart attack followed by bypasses as well. So I had all the test performed including the Cardiac Catheterization with no result of any problems. So my heart was not an issue according to these. What I did have a was a pain in my chest that I could only describe as my heart hurting and later after wearing a holter monitor for 14 day which showed my heart having an unusual beat racing up and slowing down. I have seen no further heart Doctor on this especially after diagnosis of Mito.

Skeletal Muscle is what we will move onto next which actually will include a wide variety of symptoms and I will refer to and article on Mitoaction.org’s website as reference material. It was in reading this article on Fatigue and Exercise Intolerance I came to understand some of my varies symptoms and how they were related together. I had just thought before that my body was on strike against itself prior to reading this article. I was better able to understand my muscle weakness and overall fatigue and how it related.

In the article they used the term exercise intolerance but for me it is more like just living life intolerance. I do not go to the gym each day so the term exercise must refer to something otherwise. What I am doing is trying to maintain my way of living. I have a farm with animals, chores and such that I have to deal with each day and it is this that I am having a great amount of difficulty with especially since I am no longer able to work either.

First of let me give a bit more background about myself beyond my age and sex. All my life I have been a high strung individual doing everything obsessively you might say. I rarely asked for help and always put a 150% into what I was doing.  I am a workaholic working well beyond 40 hours a week and always excel in whatever I pursue. So when I suddenly started getting sick with weakness and all these other symptoms my mind has had a very hard time adapting to this disease as it is not in my makeup. That being said we can understand my psychology as well especially with some of the early Doctors suggesting a shrink since they didn’t know what I was suffering from and since I knew I wasn’t depressed it was a little crazy dealing with them.

So I have not experienced muscle spasms or cramping as you would think of them. What I have experienced is overall soreness in my skeletal muscles which can be construed as cramping and locking up or tightening of muscles as spasms. Once again it was just my perception in not being able to relate these symptoms effectively to the disease. Which also at first gave me the impression that maybe there was a mistake since my symptoms appeared to be unrelated. Also being awaken from sleep by muscle pain and or headaches make much more sense now.

My shortness of breath, the pain in my chest and heart beat all fall in here as well. As does my feeling like suffocating when I eat. I had just thought it was a pulmonary problem I had when related to these breathing problems and not how the disease was effecting the varies parts of my whole system. This lack of proper energy (Mitochondria) has effected every part of my body and like the domino effect has an even more wide range costs.I have sleeping disorder in the form of insomnia, and moderate sleep apnea. Also my heat/humidity intolerance falls in here especially since I first thought it was a breathing issue at first as well.

Digestive tract is our next symptom in our list. I have acid reflux no matter what I eat and I am taking acid pills everyday as well as tums to. I have both constipation and diarrhea which to me often seems at the same time. The intestinal obstruction referred to in the featured Image for me  has to be the pain I feel in my stomach. Its always in the same place a pressure like my guts are falling out. This is another area in which I had looked at early on but it seemed so unrelated at the time I just put it to the side but now must reexamine the symptom for better clarity.

My mind is my last symptom I am experiencing and also another one that is bad compared to my previous abilities. I was sharp as a tack before and was employed in a very complex job dealing with multiple parts and record keeping on a very in-depth level. I now can no longer do the work functionally let alone the mental part of the job. I now deal with brain fog that seems to dominate my days as well as lack of focus and concentration. I am noticing my lack of ability to problem solve or think things through and I am getting very forgetful something I never experienced before in my life. As I said I had a job that required the ability to remember things and now I can’t.

Well that is the end and as the last part the memory I hope I haven’t forgotten anything. I hope it will be of some help to someone.