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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: peripheral neuropathy

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Heavy Metals Tests & Access Problems

Day by Day with a Movement Disorder Posted on September 12, 2006 by DBSeptember 12, 2006  

Yesterday we turned in my 24 hour urine catch to the lab for the test for heavy metals. Since we live within a quarter of a mile of what the EPA called one of the worst toxic waste sites they ever had to clean up, we’re very anxious to hear the results on that one. Obviously, there are several metals that could cause the PN, so this is a key test. I started to just let DH take the container back by himself, but it’s a good thing I didn’t. They had such a hard time drawing blood Thursday that one of the vials had clotted, so they had to draw more blood from me yesterday. That would have been terrible, to go to the doctor next week and not have all the tests completed.

I’m finding the oddest places that I’m having trouble navigating with the walker. The door to the bathroom at the hospital lab was so heavy that I couldn’t get it open and get the walker through it, too. DH had to get up and hold the door for me. Then, when I got in the bathroom, there was no hold bar — in a HOSPITAL bathroom! I couldn’t believe it! We got the phone number of the maintenance department from the lab people. That was the only number they could give us, figuring they would know who we would need to contact to complain about the bathroom not being compliant.

We went to an old Wendy’s for lunch, and it took 2 people to hold 2 sets of doors open at the same time to get the walker through the vestibule doors, the way they opened on each other. That’s crazy!! Nobody in a wheelchair would be able to get in that place alone. They’re going to get a call, too. We’ve been talking to managers for years about maneuverability issues we saw pertaining to wheelchairs, but we’ve obviously missed some in places we never took my mother. You just don’t notice things like that until you are confronted with them yourself.

Posted in Uncategorized | Tagged accessible, eating out, peripheral neuropathy, tests, toxic chemicals, walker | Leave a reply

Is My Mind Playing Tricks on Me??

Day by Day with a Movement Disorder Posted on August 26, 2006 by DBAugust 26, 2006 2

Another reason I’m afraid of using a walker in public is that I’ll be setting myself up for future embarrassment. I’ll have to explain that one.

My original back flare up, that precipitated this difficulty walking, was caused by spending the better part of this last year taking care of our older daughter, as she was in and out of the hospital something like ten times for about 60 days total. I stayed with her constantly with each hospital trip, “sleeping” in a recliner, and my back paid for it.

I took care of her at home in between hospital visits, too, often getting up in the middle of the night for hours dealing with her needs. I all but single handedly packed and unpacked their things, as the apartment our SIL and she were in was not handicap accessible. The apartment people moved them from one apartment to a better one that she could get in and out of easily, and it had an extra bathroom, too, which was a big help. All that packing and unpacking took its toll on my back, too.

I survived by just about living off of Goody powders that whole year, as I kept a backache and a headache almost constantly. So why am I worried about being embarrassed??

Our daughter developed Peripheral Neuropathy as a result of nutritional deficiencies from Gastric Bypass surgery that she had had almost a year and a half before. In a matter of a couple of weeks, she went from noticing being a little clumsy to not being able to hardly stand at all!! It took them quite a while, with lots of second opinions and tons of tests to decide on a diagnosis and course of treatment, but she’s doing fine now.

What worries me is that the stress of all this may have caused me to develop a psychosomatic illness, triggered by the very real pain I was experiencing from my herniated disk. When the epidurals took care of the pain, the walking did not improve. Here I am, with Peripheral Neuropathy, after helping our DD, who has Peripheral Neuropathy?? Sounds a little fishy to me, don’t you think?? Oh, and before you jump to a wrong conclusion, dear reader, she’s adopted, so that rules out a genetic link.

Our family knows just how much stress I have been under for some time, as I have been the care giver for my mother and FIL with Alzheimer’s, my DH with cancer, and have had surgery myself, besides taking care of our DD. I’ve also been the main care giver for my Daddy, who is now 101, lives by himself, and is legally blind. Yes, he’s amazing!

My family will understand if I am suddenly “cured”, because it turned out to be all in my mind, and not a physical problem. I’m not so sure others will be so forgiving, but will think I was trying to get sympathy or something, using the walker when I didn’t “need” it.

Posted in Uncategorized | Tagged difficulty walking, headache, herniated disk, peripheral neuropathy, psychosomatic | 2 Replies

A Personal Journal

Day by Day with a Movement Disorder Posted on August 21, 2006 by DBAugust 21, 2006  

I’ve been waiting for six weeks to see Dr. S to find out what he thinks is wrong with my legs. I tried to remember everything I could that he might possibly need to know about my past history. I still forgot to tell him about the Bolt Factory and the functional dysphonia diagnosis I had before I quit teaching. I also forgot to tell him that I taught Chemistry for a few years, but I really don’t think that has anything to do with it at all. I did give his nurse my notes about that when we took the old back films to them. But I’m still forgetting to tell them about Uncle Bill!!

He did the kinds of hammering around that I expected and said that I definitely had diminished responses in my legs, but the upper body responses seemed normal. He was sorry that the EMG I had already had did not include any tests of the upper body and wants to repeat that test. He watched me walk, asked DH if I were that slow with everything I did, which I’m not. I did tell him I feel the shakes at times with my hands. I definitely have trouble handling pills and money, and my memory is not as good as it used to be, either, but then I’m not as young as I used to be, either.

I told him about the MRI Dr. Stan had done years ago that showed increased CSF pressure and the negative Babinski test, so he wants a repeat of the brain MRI.

He showed us what a Parkinson’s walk typically looks like, and that’s not what I’m doing. I’m not walking like the typical Peripheral Neuropathy either, so that’s the puzzle of it. I told him about my concerns that it might be psychosomatic from worrying about DD so much and being with her through all her PN hospitalizations. He said that would be the diagnosis of last resort, if I understood him correctly.

Anyway, now I’m trying to be patient while HealthSpring takes their beaurocratic time processing the request for a brain MRI and a repeat of the EMG to include the upper body as well. He wants to do a series of blood tests, too, to check for B12 deficiency and toxic metals I’m guessing.

I liked him and I have confidence in him.

Posted in Uncategorized | Tagged appointments, Babinski, CSF, diagnosis, EMG, MRI, Neurologist, peripheral neuropathy, tests | Leave a reply

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