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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: Hypothyroid

I Know Lots of Ailments I DON’T Have!

Day by Day with a Movement Disorder Posted on September 24, 2011 by DBMay 18, 2016 6

Since all this weakness started in March I’ve been tested for just about everything you can think of. I’ve been tested for Myasthenia Gravis, Hemochromatosis; Lyme Disease; Thyroid problems, including an Ultrasound of my thyroid; had a Liver Ultrasound and a Biopsy; and had an Echo-cardiogram, an ABI to test for circulation in my legs, and a Nuclear Stress Test. All these tests came back with a clean bill of health.

We are very thankful that so many of the really scary possibilities have been eliminated.

But I’m not through with the testing yet, as my liver enzymes continue to be high, and the Creatine Kinase test I’ve had twice now shows elevated MB enzymes. That’s why I had a complete cardiac workup. I have read online that neuromuscular disorders can cause high MB results, not just damaged heart muscle, but my Cardiologist wanted to rule out any heart involvement.

I told the Cardiologist I really didn’t think it was my heart, but I’ll admit that hubby and I were both very relieved when the results came back OK yesterday.

So now I wait for my October appointment with the Neuromuscular super specialist at UAB. We’re busy collecting all the test results and CD’s from the various tests I’ve had over the last few months.And I’ve been keeping a diary, too. These specialists are very difficult to get to see, and I want to be sure the appointment is as productive as possible.

I still don’t walk very well, and I tire out very easily, but the Essential Myoclonus continues to be basically nonexistent. So we’re praying that the UAB specialist will be able to pinpoint the problem and help us deal with it.

Posted in Tests | Tagged ABI, Creatine Kinase, Echocardiogram, Hemochromatosis, Hypothyroid, liver biopsy, liver enzymes, Lyme Disease, MB, Myasthenia Gravis, Neurological Disease, Stress Test, ultrasound, weakness | 6 Replies

Hemochromatosis – Another Possibility Crossed Off the List

Day by Day with a Movement Disorder Posted on July 14, 2011 by DBMay 18, 2016 4

Well, the DNA test for Hemochromatosis came back normal, so that’s another possible diagnosis for my weakness ruled out. But after doing the research on this particular line of testing, I would caution anyone with Anglo Saxon ancestry to consider this as a possible cause of a wide range of disorders, from Type II Diabetes to heart problems.

It’s the most common genetic mutation found so far, with as many as 1 in 8 of Irish descent being a carrier of the gene. Something in the range of 1 in 300 Northern Europeans have at least one of these mutated genes, but it takes the mutation from both parents for the likelihood of symptoms to be dramatic. And if caught before organ damage is done, it can be easily treated. It normally takes many years to build up the iron overload, so most people don’t show symptoms until they are older.

With the Hemochromatosis test being normal, my Gastro doesn’t want to see me again for 6 months. So I guess that means he’s ruled out any liver problems as being the cause of my problems.

So, I’ve requested a Western Blot Lyme Disease blood test. I know this is a very, very long shot, but I have had the bull’s eye rash from a tick bite in the past. We found it one evening and were waiting at the doctor’s office’s doorstep the next morning. He put me on a round of antibiotics at that time. So the chances of having Lyme are not high, at least from that event. BUT, I have always lived in Alabama, and ticks are everywhere. I can’t count how many times I can remember finding them on me over the years, and their bite doesn’t always make the bull’s eye rash.

Lyme Disease can mimic lots of other diseases, depending on which organs the bacteria attacks, including neurological disorders. Treating it involves long term antibiotics, which may or may not reverse the damage already done to the body. So, I’m hoping this test turns out to be negative.

I did get a referral from my GP to an Endocrinologist, and I have an appointment with him in mid August. I’m still holding out hope that this terrible weakness turns out to be from Hypothyroidism, which our daughter has been treated for for many years. My symptoms do fit, even though the routine tests came back normal. But it is possible to have a hypothyroid condition with normal tests. It would explain my muscle weakness, hoarseness, and intense itching, and it’s fairly easy to treat.

I see my Neuro again next week, so we’ll see what he says then.

In the meantime I continue to use the cane outside the house, and could really use the walker. But I’m back to that same head space I was years ago when I was originally dx with Parkinson’s. There’s just something about “giving in” to the walker that I try to put off as long as possible. It’s bad enough having to use the cane, without having people see me as getting worse. It draws too much attention to me, and I can’t stand that.

So for now, I’m praying this turns out to be something simple to treat, like thyroid problems, and not some exotic disease that may never be diagnosed.

I’m trying to be patient, but frankly I’m not doing a very good job of it. I deal with an enemy I know much better than I do the unknown. But I’m in God’s Hands, and He knows my needs far better than I ever could.

Posted in Tests | Tagged cane, diagnosis, difficulty walking, Endocrinologist, Gastroenterologist, Hemochromatosis, Hypothyroid, itching, Lyme Disease, Neurologist, walker, weakness | 4 Replies

Limbo Land is No Fun!

Day by Day with a Movement Disorder Posted on June 24, 2011 by DBMay 21, 2016 4

Well, the blood test came back normal, as did the Jolly test. I’m still having all the same weakness, gait problems, and hoarseness, though. From what I’ve been able to research on Google, neither of these tests is totally reliable, so I’m not ready to breathe a sigh of relief just yet.

I have asked that my Neuro refer me to a particular Endocrinologist, though, so maybe I can get an appointment with him next week. Well, I mean get the authority to make an appointment next week. No telling how long I’ll have to wait to actually SEE him.

Hubby and I are hoping I turn out to be Hypothyroid, as all my symptoms fit that disorder, and our daughter takes medication for it. All my thyroid tests were normal, but that doesn’t mean I don’t have a thyroid disorder. THAT would be easy to fix with medication, so we’re hoping that’s it.

I’ve all but quit jerking, too, even though I cut the Primidone from 3 at a time to 2 at a time, so I lowered it to one tablet morning and night yesterday, and I’m still not jerking. Very weird.

It sure would be nice and neat if medical tests were 100% accurate in every case, but this is real life. There are always exceptions.

Posted in Tests | Tagged balance, blood tests, difficulty walking, Essential Myoclonus, hoarseness, Hypothyroid, jerks, myoclonus, Primidone, thyroid, weakness | 4 Replies

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