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.