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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: Faith

Earning my Medical Degree

Day by Day with a Movement Disorder Posted on August 22, 2012 by DBMay 8, 2016 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!!!

Posted in Medicines and Supplements, MITO, Tests | Tagged blood tests, epidurals, Faith, God, Great Physician, MITO, Mitochondrial Myopathy, MRI, nutrition, Nutritionist, pain, weakness | 4 Replies

I’ve Been OFF the Ulcer Antibiotics for a Week Now

Day by Day with a Movement Disorder Posted on August 31, 2008 by DBMay 25, 2016 2

Well, I’ve been off of the PrevPak high powered antibiotics for my ulcerated lower stomach now for a week, and I am not feeling good at all. I had hoped once the meds were out of my system that my energy level would pick back up. But my stomach still feels heavy and sometimes there’s the same dull pain. I just don’t feel good. Nothing I can really describe … one of those you know it when you see it kind of things. I’ll keep on eating a little something with each dose of pills, and I’ll be calling the Gastro this next week for sure.

We had a very sad occasion at our church this week. Our Minister of Music passed away from kidney complications after his second heart transplant surgery. We did not go to the funeral, which was huge. He was well known all over the state from long time service in many churches and choir functions. I just was not up to the crowd. And I did not go to Sunday School today either. Our class is about half choir members, and I knew they would be so upset. I can’t handle my emotions at all any more, and it makes me jerk and shake when I get upset. So hubby came back and got me for church. It was a beautiful worship service, but as the Pastor said – Everyone was in a fragile state right now. I’ve never been in a church where a staff member died. It was almost like a continuation of the funeral service in a way, except more joyful. After all, we know he is well and happy now, although people close to him personally still grieve for his loss here on earth.

It does help to put my aches and pains into perspective, though. So I feel yucky. I can still get up and move around the house easily enough, and I can work on the computer as much as I like. I enjoy helping people on the Lost Toys Search Service, and it’s fun to get sales from our website and on eBay. I enjoy hearing from our children and grandchildren, and I have the most wonderful hubby any woman could ask for.

I am truly blessed by God, and I can’t thank HIM enough for all the blessings he has given me over my lifetime.

Posted in Quality of Life | Tagged Church family, exhaustion, Faith, Gastritis, Gastroenterologist, GERD, God, grieving, hope, Love, pain, prayer, Quality of Life, stomach, stress, Sunday | 2 Replies

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