Tag Archives: Mitochondrial Myopathy

Bones, Muscles, and Pain Equals Surgery

Day by Day with a Movement Disorder Posted on by 2

Bones

Two years ago my bone scan came back showing excessive bone loss. My mother’s hip broke and caused her to fall (not the other way around). That, and the scan results, put me in the high risk category, so I’m very motivated to improve my bone density.

My OB/GYN put me on daily Evista to treat the Osteopenia, but I had a severe muscle spasm problem while on it. Not surprising, considering how much jerking, twitching, and trembling I’ve had at various times over the years, due to my Mitochondrial Myopathy. I stayed on the Evista for two months, thinking surely my body would adjust to it, but it just kept getting worse.

(My Orthopedist suggested I try Forteo, which is a daily self administered shot, and I have not had any bad side effects with it. I’ve been on it for eight months now.)

Muscles

Even after I stopped taking Evista, the muscle spasms didn’t stop, particularly in my upper back and neck. I started upping the doses of Methocarbamol muscle relaxer and Neurontin (for nerve pain), trying to control the pain. The more pills I took a day, the more foggy I became. I couldn’t function without the pills, and just barely with them.

My Neurologist did another MRI on my neck and sent me to my Orthopedist for a series of epidurals. These helped, but not consistently, and they will only do four a year. So the relief from pain was fleeting. The last epidural I had didn’t help at all.

Pain

By February of this year I was in severe pain all the time. It had radiated down my arm, midway down my back, and gone up to the top of my head. The headaches felt just like someone had a huge nail pressing into the top of my skull. February 25, 2015 was my turning point. I ended up in the ER with my blood pressure over 200, and my head about to explode. They brought it down with IV meds and sent me home.

Surgery

I started on Amlodipine blood pressure pills and went to my Orthopedist to ASK him for surgery. After looking at the new X-rays and MRI of my neck, he agreed. On March 24th I had Anterior Cervical Discectomy and Fusion (ACDF) of C4-C5 and C5-C6. I stayed in the hospital that night and came home the next day. The hospital stay is a blur for me, because I was on a Morphine pump. About all I remember is the nurse telling me to “push the button” over and over. And I remember choking and gagging on whatever it was they tried to feed me.

Recuperation

I had researched the surgery, of course, so I was aware that they go in from the front of the neck, moving the esophagus aside so they can reach the disks and vertebrae. Hoarseness is a common side effect of this surgery and often swallowing difficulties as well. For most people the hoarseness only lasts a few weeks. At first it was an effort to squeak out even a syllable or two, and everything I tried to swallow choked and gagged me. And there was more swallowing pain than I had expected. I should have known there would be considerable pain; they sent me home with a prescription for 90 Norco tablets.

It’s been about six weeks now, and I’m still a little hoarse, although much better than I was to begin with. I’ve been using Thickit to make swallowing liquids easier since the first week at home. I’m needing it less and less now.

Outcome

The voice and swallowing problems have been very frustrating, but become less of an issue each day. But the neck, shoulder, and back pain have diminished from 8-10 to 3-4!!! I’m no longer on blood pressure medicine, and I usually only take two muscle relaxers a day.

I was apprehensive about having this surgery, but I’m glad I did.

I consider the operation to be a Success!! Praise God for his gracious healing.

Still on LCHF Lifestyle – Still Dealing with MITO

Day by Day with a Movement Disorder Posted on by 2

I’m continuing on with the Low Carb High Fat lifestyle and finding it very easy now to comply with the no grain, no below ground vegetables, and no legumes or beans other than green beans.

I’m using an easy to make dessert that satisfies my chocolate craving and a no wheat egg bread recipe that cooks in the microwave oven in less than 2 minutes. Those two recipes alone are probably responsible for keeping me on this diet.

My eyes are better, but still not back to normal. My eye doctor really doesn’t think the change in diet is at fault, as tears are made of lipids (fats), and I’m certainly getting plenty of good Medium Chain Triglycerides in the Coconut Oil I consume daily.

He would normally prescribe steroid drops at this point, or Restasis. But we’re both reluctant to do that, because of my Mitochondrial Myopathy. So he’s recommended hot compresses twice a day and massaging the lids with a water and baby shampoo solution. The hope is that my tear glands will start producing more tears due to the stimulation.

I am losing weight for sure, and I’ve only felt hunger a few times since I started this diet in earnest in mid January. The first couple of weeks in January were spent gradually changing over and using up the food that was already in the house.

The digestion issues resolved themselves, as I had hoped they would. I do take MiraLax every morning, but I’ve been doing that for many years. My digestive system muscles are weaker than normal, thanks to the MITO, so dealing with constipation is par for the course.

I did have an upsetting situation develop in church today. We’re having some kind of short in our sound system that has caused me to go into Myoclonic jerks the last few weeks. But it seemed like today there were more sudden high squeaks from the organ and more crackling sounds out of nowhere that just set me off. By the time the service was ending I was in full Myoclonus and crying. Everyone nearby came to find out if I was OK, but all I could tell them was that I was OK, but the genetic disorder I have makes me have a hyper startle reflex.

I really appreciate their concern, but it embarrasses me when I go into one of these “fits”. The more I try to stop the jerking, the worse they get. I just have to find a way to relax and wait them out. It’s been some time since I had this much trouble with the jerking, but the constant pain I’ve been in for months now probably contributes to my tolerance level for unexpected noise being way down low.

So I continue to have muscle issues and other odd problems caused or exacerbated by MITO, but I’m also working hard to find the right combination of diet and activity to maximize my quality of life. I have been reading every book on nutrition I can get my hands on for several years now and continue to do so. And I’m currently going to physical therapy twice a week, hoping to strengthen the muscles in my neck, back, and shoulders and alleviate my pain.

Irritated Eyes and Digestive System – UGH

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I’ve been dealing with eye issues for the last few weeks. I figured it was just allergies, as I’ve had a runny nose, too, but I obviously didn’t have a cold. Lots of itchiness and feeling like I had an eyelash in my eye, and it was progressively getting worse. I reached a point where being in sunlight or in bright lights was very painful.

So off to the eye doctor I went, reluctantly, but I really didn’t have a choice. Turns out it was a bacterial infection, and he put me on antibiotic and steroid eye drops.

I was still very uncomfortable, even after I finished the bottle, so we went back to the doctor. I have a history of dry eye syndrome, so this time he plugged the lower tear duct holes with lachrymal implants. The purpose of these is to keep the tears from evaporating off the eyeball so quickly.

Thanks to my Mitochondrial Myopathy, we both agreed that the implants were a better choice than Restasis, the usual drug prescribed for this issue. The fewer toxins I put in my body the better. He had tried the implants some years ago, but they came out. At least they got me through the allergy season that had me irritated at that time. I’m hoping for the same good outcome this time.

I’ve also had constipation problems ever since we were stuck in a hotel for two days after a harrowing two plus hour drive to get out of the unexpectedly heavy snow storm that hit the South last week. I shouldn’t be surprised, considering both of our stress levels had to have gone through the roof while we crept along that three miles to the hotel.

We weren’t able to eat what we normally would either, which I’m sure just added to the problem. But the reason I bother to mention this is the new LCHF diet I’m on makes me wonder if the constipation was more due to stress or to the drastic change in what I eat, particularly the huge increase in my fat intake. Time will tell whether it’s diet related, or just a blip caused by such an unusual week.

I know how to deal with the constipation, as that has been a recurring problem for many years. One of the ways my Mitochondrial Myopathy presents itself is a slow digestive process, called gastroparesis. But not being able to read for any length of time or work on the computer is bothering me greatly.

I pray that the implants stay in long enough to improve the quality of my tear production and heal my irritated eyeballs. And I hope the constipation problem was temporary and not caused by the LCHF lifestyle I’m trying very hard to live.

Trying the Low Carb High Fat Lifestyle

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I’ve been studying anything and everything I could get my hands on about mitochondria and cellular energy production ever since I received the diagnosis of Mitochondrial Myopathy. Since the doctors can’t offer much in the way of treatment, other than suggestions of taking CoEnzymeQ10 and B vitamins, it seemed that if I were to improve – it was going to be by improving my diet.

So over the last year I’ve studied several books and searched all over the internet for information about Paleo, Biblical diets like the Maker’s Diet, and most recently Low Carb High Fat (LCHF), or Ketogenic diets. These are not “diets” in the usual sense of the word, but lifestyle changes. I found quite a few points of common ground in all three of these approaches.

All three emphasize eating the way God meant for our bodies to be fueled, long before the food industry convinced us that stuff in pretty cardboard boxes was better for us than real food. And all of them would be appropriate for my Type II Diabetes.

After seeing Dr. Perlmutter on the Dr. Oz show some time ago, I bought his latest book, “Grain Brain”, and found his approach to make sense for me.

So I’ve been grain free and also greatly increased my fat intake for about the last two weeks and can definitely tell the difference in my energy level. And I don’t just mean I feel peppier – I’ve actually not been as cold as I normally would have been. It may just be a placebo effect, but I’ll take it, either way!

I’m hoping I will see some of the brain fog lift as well, as I reduce the inflammation in my gut that gluten has probably been causing. In all the years of digestion issues I’ve had – I have never been tested for gluten sensitivity, even though I have been diagnosed with IBS and GERD, as well as experienced several ulcers over the years. Since I have so many symptoms of gluten sensitivity, it seemed worthwhile to experiment with the Grain Free approach for at least a couple of months.

I don’t think the dietary adjustments required in a LCHF or Ketogenic diet are something that everyone would want to adhere to, but the continued pain, lack of energy, and brain fog I’ve been experiencing now for several years has made me desperate enough to try just about anything that looks safe.

Now THAT Was a Doctor Appointment!!

Day by Day with a Movement Disorder Posted on by 4

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!

Earning my Medical Degree

Day by Day with a Movement Disorder Posted on by 4

I decided that the only way I was going to be able to get an accurate picture of what nutrients and supplements I was taking was to get out all the bottles and make a spreadsheet of each and every nutrient in them, with the amount of each vitamin, mineral, enzyme, etc., they contained.

That task took me a couple of weeks, because I kept getting confused by all the various ways different bottles displayed their contents. But I finally finished it, and I now know how much each pill costs me a day, how long a bottle lasts, and exactly what the total is for each supplement. I found one, D3, that I felt sure I was getting too much of, so until I can see a Nutritionist, I’ve cut that dose down considerably.

I’ve asked every medical doctor I’ve seen in the last month or so if they could refer me to a Nutritionist, with very little help in that direction. I saw my Neuro last week, and he gave me a recommendation. I have an appointment with that Dr. in November. Until then I’m basing my supplement regimen on my own attempts to do research.

I feel like I’m studying for a medical degree!! And I’ve about decided I know more about Mitochondrial Myopathy than 90% of the doctors I see.

My Neuro has finally decided that it’s time to try to do something about the ongoing pain I have in my neck, down my arm, up into my head, and in the mid back under my shoulder blade. So I had an MRI Monday. The tech really did all she could to make me comfortable, but lying still on my back on a hard surface is just something I can’t do. About half way through, the nerve from my neck going past my elbow and down to my pinky finger was causing such intense pain that I started having Myoclonic jerks – all that did was make her have to repeat one of the series – and make me lie there that much longer!

I haven’t recuperated from the MRI yet. Still feel completely worn out, plus I had another doctor’s appointment yesterday to make me even more tired. I did get some blood work done there that I’m quite anxious to see the results, compared to a year ago when they were so abnormal. I had another appointment scheduled for tomorrow, but I postponed it.

The epidural is scheduled for next week, and I’m trying really hard to remain positive about it. I had epidurals many, many years ago that gave me great relief, and I’m praying for the faith that I will get relief from the ones coming up. It usually takes several to get maximum results. My fear, that I’ve not totally overcome, is that the steroid will send me into a tailspin of weakness. That has happened to me twice in the last 10 years – once when I was on Parkinson’s meds, and last year when I had massive steroids to treat Angioedema (severe swelling of the lips and face from a drug reaction). Both of those times I was barely able to gather the strength to talk, eat, or move around at all for months afterwards. I pray I don’t have that kind of problem this time.

I do intend to continue with the series of posts I started about the various supplements I take, as it helps me to think through what the benefits to me are and understand more fully the mechanism by which they work to improve my energy.

I covet your prayers over the next week, and I pray for the faith to depend on the Great Physician, who DOES understand my disease completely!!!

Co-Enzyme Q10, Ubiquinone, Ubiquinol

Day by Day with a Movement Disorder Posted on by 2

I’ve spent a great deal of time during the last year doing research on vitamins, minerals, enzymes,  cofactors, foods, and herbs that promote the best possible energy production in the mitochondria of our cells. So I figure it’s time to try to pull together some of what I’ve learned.

You don’t have to have a Mitochondrial Disease to reap the benefits of proper nutrition. Whether you are trying to improve or maintain your health, I hope you’ll find some of this information to be useful. But of course I am not a medical professional, so I can only tell you about what I’ve read and tried.

Since I have been gradually adding a wide variety of supplements, it’s hard to decide how much of my improvement can be attributed to any given effort, but so far I’ve not stopped taking most of what I’ve tried.

I’ve chosen to start this series of posts with information about Co-Q10, because that’s the only supplement that was suggested to us by the UAB specialist who diagnosed my Mitochondrial Myopathy. I was told at that time that it might help, but there is no known treatment and no known cure for this disease.

Almost immediately I started working up to an 800mg dose of CoQ10 spread over the day. Because I have a tendency toward insomnia, and I had read that taking CoQ10 late in the day could cause sleep issues, I decided to be finished with the CoQ10 with my afternoon snack. From what I have read it can take several months of use before a person can tell any difference. I seemed to be a little stronger within about a month of starting it. And I’m certainly stronger now than I was in October, 2010.

WebMD is a good place to get simply written information concerning medical issues, so read more about Coenzyme Q10 here. It is a vitamin like fat soluble substance. CoQ10 is a key ingredient in the chain of chemical reactions within the mitochondria in our cells. This process generates 95% of the human body’s energy.

It is also an extremely powerful antioxidant. Antioxidants are needed because all the natural processes that are constantly going on in the body produce free radicals. And we eat, breathe, and come in contact with a world full of chemicals that release free radicals into our bodies. Left un-neutralized by antioxidants, these free radicals can cause genetic mutations that can lead to serious diseases such as Diabetes, Parkinson’s, and Cancer.

The cells can’t directly use CoQ10 in the less expensive version, which is ubiquinone. But normally humans can easily convert the ubiquinone into the ubiquinol form that the cells can use.

But I’m far from normal when it comes to the way my Mitochondria function, or should I say fail to function. So I decided it made more sense for me to take the more expensive Ubiquinol form, which is not supposed to require as high a dose to receive the same benefit, as it’s immediately available to the Mitochondria. I’m currently taking 600mg Ubiquinol, still taking the last dose in the afternoon.

From Fibromyalgia to Heart Disease, there’s a long list of diseases and disorders for which taking CoQ10 might be beneficial. I hope you find this post to be useful, and I look forward to reading your comments.

Doctors, Doctors, and More Doctors

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I’ve all but lost track of how many doctor’s appointments I’ve had since I last wrote. I’ve been to my Gynecologist twice, a Urologist, my Podiatrist, three Neurologists – one of those at the Muscular Dystrophy Clinic, as well as my own Dermatologist twice and a Dermatology Surgeon.

The upshot of all those visits is that the Neurologists can’t tell me any more than the UAB Neuromuscular specialist told us after the muscle biopsy results came back – there’s no treatment and no cure. I can’t even get any advice from them on beneficial supplements or my nutrition. So we have basically fired the UAB Neurologist and the MDA Neurologist and don’t intend to return to them. I will continue to see my own Neurologist regularly, however, as I need to touch base with someone from time to time for prescription refills and to have someone I can get an appointment with when needed.

I’ve been having urinary difficulties ever since my muscles started weakening, so I finally decided it was time to try to get help. My Gynecologist referred me to a very nice Urologist, and I have confidence that he will find a way to help me deal with these problems.

I’m spending hours a day doing my own research on vitamins, minerals, and herbs that might help maximize my cellular energy production and minimize oxidative stress at the cellular level. It’s a good thing I have a chemistry background. I never thought I’d have a use for that Biochemistry course I took almost 50 years ago! LOL! Not that I actually remember any of what I learned back then, but it has made reading all these online papers a little easier.

I’ve found several excellent books that I’ve read from cover to cover more than once, making notes about combinations of nutrients that work synergistically to improve energy production in the cells and decrease the level of gene mutation. And I’ve also wasted my time on a few books that turned out to be selling some proprietary program, rather than really trying to educate.

Thanks to my research, I’ve been gradually adding a variety of megadose vitamins, enzymes, and minerals, as well as continuing to use the herbal formulations. And all these capsules, powders, and tablets are showing a positive result. I continue to do my physical therapy, but I seem to have plateaued as far as how much I’m able to do at one time. The muscle fatigue takes over pretty quickly. But I definitely feel stronger walking in public than I did a few months ago. And my neck and back pain are more under control than they were. I was able to find a back support that stabilizes my neck and head, so I can manage sitting in a church pew a little easier, and the Neurontin and Robaxin help with the pain, too.

Mitochondrial diseases are caused by mutations of the DNA in the mitochondia, so it didn’t come as a complete shock that my Dermatologist found a squamous cell carcinoma on my face. I had Mohs surgery the next week, and it seems to be healing very well. I had to return to the Dermatologist last week, however, when a patch of skin very close to the scar became painful. The biopsy showed that spot was precancerous, so that area had to be frozen.

Next week I see my Opthamologist for my yearly exam. The retina, particularly the macula, is extremely susceptible to oxidative stress, so it’s very important that I do all I can to keep my eyes as healthy as possible.

My Diabetes continues to be under good control with diet, but I have been gradually gaining weight for the last few months – something I’m not happy about at all. I know some of it is water weight, because that’s a known side effect of some of the nutrients I’m on – but it’s not all water weight by any means. I think some of these supplements have increased my appetite, and my will power isn’t holding up too well to the urges. That’s definitely an area I need to work on right now.

I’m very thankful that I have been able to improve as much as I have in the last few months. I know a whole lot more about the process of cellular nutrition and ways to slow the genetic mutations. My hubby and I have faith that God will give us the wisdom to make good choices for supplements, exercise, and nutrition, and that He will guide the decisions my doctors make.

Making Progress

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I’m pleased to report that my exercises are actually showing improvement. My neck is still giving me trouble, but I have been able to add a small resistance to some of the neck exercises and still do 10 repetitions. I see this as a sign of progress. But I am particularly pleased with improvement in the leg exercises. When I started I could not do a straight leg lift with my left leg at all. It simply would not budge. Now I can raise it for 10 repetitions, although the muscle starts complaining after the first 5. That is a huge improvement! And I can tell that I’m walking better, too.

I’m now on many of the natural herbal versions of my vitamin and supplement routine, as well as taking the full Mito Cocktail regimen. There’s really no way to be sure if the muscle improvement I’m experiencing can be attributed to the exercising, the supplements, or a combination of both. I assume it’s a combination of consistent exercising and the high powered doses of vitamins and cofactors I’m taking. Insurance won’t pay for any of these supplements, so to say the least – they’re expensive. But less pain and my increased energy make it worth it to us.

I continue to read everything I can get my hands on about vitamins and supplements, and I’ve learned a lot and been reminded of much I had already read about. I am now taking a low dose of Prozac, and my Neurologist prescribed Neurontin for pain, so maybe my improved outlook can be attributed to that – but I’d like to think I’m feeling better because I AM better! Either way, I’ll take it!

Hocus Pocus Dominocus

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I did something the other day I would have never thought I would ever do. I went for an herbalist consultation.

You have to understand that I have a science background, having taught Chemistry and Physics. I’ve been to a Chiropractor within a doctor’s office a few times over the years, but never felt comfortable doing it. So making an appointment with this person was a real leap for me. But you also have to understand that hearing the words from your doctor – there’s no treatment and no cure – leaves you looking in different directions for help.

So, I did a lot of online searching about this particular herbalist and was impressed with what I read. I’m certainly not opposed to medicating with natural substances – I’ve been taking the Indian herb Turmeric for years at the recommendation of hubby’s Oncologist. After all, part of the Mitochondrial DNA mutations I have were caused by some of the prescription meds my doctors previously had me taking, so there’s no guarantee that common prescriptions are safe for everyone.

But I was extremely skeptical about HOW the process of deciding what I needed would be determined.

It’s called Applied Kinesiology, and it sounds like something that could win the QUACK Award of the Century! But it wasn’t invasive in any way, and we are at our wits end trying to find someone who will help with deciding what vitamins and supplements would help me. Through research on the Mito sites I’ve gradually added the supplements recommended in the Mito Cocktail, with no real way of knowing if we’re wasting the money on them or not. Plus over the years I had gradually added a bunch of antioxidants and vitamins, trying to improve my general health. We’d also improved our diet considerably, so now we eat a large number of Super Foods, with a good many being raw.

So we’re desperate for some guidance with what to spend our money on and what not to waste it on.

I can honestly say that we DID see an obvious strength or weakness in my muscle strength when holding in turn each of the vitamins and supplements I’ve been taking. (There was absolutely NO attempt to test my prescriptions, or to imply that I should not continue to use them or stop seeing my doctors.) After “testing” my box of supplements, the herbalist proceeded to test a variety of different herbs and vitamins on me, noting those where my muscle strength was the greatest.

After about an hour of this process, we were given a list of specific vitamins, supplements, and herbs that were supposed to be more affective for me than some of those I had been taking. But most of what I had been using were said to be effective and useful for me.

We left with the list, and I spent the next day researching each of these recommendations, checking for side effects and possible interactions with my prescriptions and other supplements. As far as I was able to determine there should be no problems with any of them. I didn’t order all that were recommended, but I did order several substitutions for over the counter versions of vitamins I had been taking, replacing them with herbal versions supplying the same vitamins more naturally.

So my new herbs should be arriving any day now, and I’ll let you know in a month or so if I can tell any difference. Wish me luck!!