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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: iron overload

Still Being Tested

Day by Day with a Movement Disorder Posted on July 6, 2011 by DBMay 18, 2016 2

Since April I have been tested too many times to count. Some blood tests have come back normal, and others have not. The liver function test that was abnormal right after the angioedema from the drug reaction came back normal the next time it was done, and now it’s abnormal again. That has prompted my Gastroenterologist to do a bunch of additional blood tests. And some of those results led to even more blood tests. I’m a human pin cushion right now. LOL!

I’m using the cane all the time out of the house now and basically furniture walking in the house. And I’m not jerking, even though I have cut my Primidone down to just one tablet morning and night. I see a small bit of jerking very occasionally, but nothing like it used to be.

Until my doctors figure out what’s going on, I’ve stopped taking all my other meds, vitamins, and supplements, except the Miralax. So far my blood pressure has remained in the normal range, and considering how stressful this whole business has been… that’s wonderful.

And I’m considering stopping even the Miralax. I’ll have to be careful with that, though, or the old constipation problem may return. I’m still eating prunes and nuts for a snack most afternoons, and we eat raw spinach frequently. So I’m still getting a good bit of iron in my diet, but not any supplemental iron. I’ve even stopped eating bran cereal for breakfast.

After doing a lot of research online on the various tests they are running, I’m beginning to think my problems are caused by an iron overload in my system. If all that’s happening with me does turn out to be caused by iron overload, I don’t want to make it any worse if I can help it. The good thing about it is that there are simple ways to treat that problem if caught soon enough, so we’re keeping our fingers crossed.

Posted in Tests | Tagged blood pressure, blood tests, constipation, diagnosis, iron overload, jerks, Miralax, prayer | 2 Replies

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