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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!

Category Archives: Symptoms

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Constipation is Better – Jerking is Worse

Day by Day with a Movement Disorder Posted on November 27, 2008 by DBMay 24, 2016 4

It looks like the addition of the extra dose of Miralax in a small glass of prune juice is helping with the elimination problems. I’ve also changed from Primidone to Neurontin for the Myoclonus. It doesn’t work quite as well as the Primidone did, but it’s not supposed to have constipation as a severe side effect.

I’ve noticed a lot of inadvertent double letters as I type. My finger just jerks back down without my meaning for it to. I’ve mistakenly double clicked on a lot of things too. So I have a trade off of a little bit of jerking in exchange for a more comfortable elimination process. I’m happy with that trade off. But probably next week, after things are back to normal after Thanksgiving, I will try the Primidone again for a week and see how I do with that. It’s my body, so it will be up to me to decide which result I can live with .

Our daughter had planned on having the Thanksgiving meal at her home, but she and her hubby have been sick with some kind of stomach flu for the last few days. They are still planning on cooking everything, but she didn’t feel like cleaning her house for company. So, we will be having everyone here at our house tomorrow. I’ve worked off and on for the last week cleaning, and I worked more today than I have been able to do in a long time. I’m tired, but it’s a good tired.

It was the Friday after Thanksgiving last year that Daddy fell. We never knew if he had a small stroke or just fell, but he was never the same after that. He died this March at the ripe old age of 102. It’s a momentary sad thought, but he’s no longer trapped in an old man’s body and, after almost 40 years of gradually becoming more and more vision impaired, he’s now seeing some very glorious sites. That wonderful thought keeps this day from being a sad day for me.

We’re looking forward to seeing our whole family together. I have so much to be thankful for.

Posted in Symptoms | Tagged elimination difficulties, Neurontin, Primidone, Thanksgiving | 4 Replies

Tummy Is Still Complaining

Day by Day with a Movement Disorder Posted on August 14, 2008 by DBMay 30, 2016 4

I’ve been on the Prevpac high powered combination of two antibiotics and an acid reducer twice a day now since Monday, and my tummy is cramping more now when food or medicine touches it than it was before I started the medicine! Go figure. I’m going to call Dr. B’s nurse this morning, to see if there is something else I should be doing.

I have continued with the Glycerin suppository routine, but I quit the Milk of Magnesia every 3 days, as it did not seem necessary. I also moved a few of my medicine times around so that the Primidone is not the last thing I take before bed. That dose was going into a completely empty stomach, since I have to empty my tummy before I go to sleep, thanks to GERD. What I came up with is not ideal, but probably better than the way I had it. Now I take the Bentyl last, which is supposed to help the digestive muscles work smoothly and in the normal coordinated pattern, instead of spasms. Not sure that is any easier on my tummy or not, so I have several questions for the nurse.

She has been his nurse for a long time, and we have a good relationship. I have the highest regard for my Gastro and his nurse. They have both been very considerate and patient with me over the years. I never feel like I am being rushed through a mill. I have had a few doctors like that over the years, and I fired them all. I grew up with a family doctor who made house calls, so I like to use medical people who are willing to build a relationship with me. I am very thankful for the great doctors and staff who help me with all my health issues.

I continue to spend a lot of time on our Lost Toys Search Service, and on our online Catalog sales. I’m still a long way from having even half of our inventory cataloged, so it keeps me busy and mentally alert. There’s something new to learn almost every day, and that’s good for the old brain cells.

Speaking of sharpening the brain, have you tried the new Numbrix puzzle that Savant has added to her Parade Magazine article. It’s fun! I even found a place online to work the ones from past issues. I could get addicted to this puzzle very easily, and it’s a nice change from Sudoku.

So, tummy is still a problem, elimination is doing better, and brain is being stimulated. I’m not feeling good, so my energy level is low, but I am getting quite a bit accomplished each day.

All in all, no brain fog and no jerks …. I’d say that’s a good thing.

Posted in Symptoms | Tagged bloating, Bowel Retraining, brain fog, brain training, Gastroenterologist, GERD, glycerin suppositories, muscle spasms, nausea, pain, Prevpac, stomach | 4 Replies

Tummy is Still Not Right

Day by Day with a Movement Disorder Posted on August 1, 2008 by DBMay 30, 2016  

I am supposed to call my Gastro’s office today to let him know how I’m doing, and I won’t have good news for him. I cleaned myself out, at his directions, and then went back to normal eating as much as I could, which is what he told me to do.

I’m still nauseated, bloated, and sore. Plus, I am still clearing my throat all the time and coughing from a tickle feeling when I eat anything the least bit spicy. And I do mean the least bit, as neither one of us likes hot foods. It always feels like the same place in my throat is being irritated.

So I suspect he will be considering an Endoscopy this time. I thought this time was different, but the usual problems did have to be ruled out.

We will be going on our usual Date Day today. I figure I won’t feel any worse than I already do, and I do need to get out of the house. Plus, it’s always a good bit of exercise for me, and I certainly need that. It’s a whole lot more fun going up and down hilly driveways in anticipation of finding some goodies than it would be to just do an exercise routine.

Posted in Symptoms | Tagged Bowel Retraining, elimination difficulties, Friday Date Day, Gastroenterologist, GERD, nausea, pain, stomach | Leave a reply

I Should Know Better – Back on Bowel Retraining Routine

Day by Day with a Movement Disorder Posted on July 30, 2008 by DBMay 30, 2016  

CAUTION: I try to be as specific with symptoms, problems, etc., as I can, so that what I write might help someone else in a similar situation. Feel free to skip this post if you’re not up to a frank discussion of bodily functions.

There’s nothing that aggravates me more than to go to my wonderful Gastrologist again with nausea and abdominal pain, only to be told to do the same thing he has had me do before. Each time I go through one of these strange “I don’t think I’m constipated” episodes, I think that it can’t possibly be the same thing I had before.

I have to use Miralax each morning, eat a high fiber breakfast cereal, drink lots of fluids, take 4 Bentyl tablets, a chewable Acidophilus tablet, and 3 Metamucil capsules every day. I’ve been on that regimen now for a long time. Until I started on the Primidone I was not having any problems with my bowels. But as soon as I started taking the Primidone, which has done wonders for my jerking and twitching, I noticed that I was heading for trouble with my elimination.

So, I increased my fiber intake, thinking that was going to be enough. And it looked like I was correct, up until the last few weeks. Then I started having a yucky taste in my mouth most of the day. I had a tickling kind of cough if I swallowed anything the least bit spicy or scratchy, and it was not going down the wrong way. I was almost constantly clearing my throat, and by the end of the day my throat was sore.

I was still having my usual 4 or 5 bowel movements a day, just as I have had ever since I went on all this elimination routine. I have problems with the muscles needed for defecation, so I have to stay just shy of diarrhea to be comfortable. I was still having times when I almost didn’t make it to the bathroom, so everything seemed as it should be as far as elimination was concerned.

So, after a miserable weekend, I decided it was time to see my Gastro, and they are so good about working me in. We saw him yesterday, and he says that I AM constipated, despite my objections to his conclusion. I am to call him Friday after being on the full Bowel Retraining routine, which I started last night.

So now, added to the list of procedures that I was already following, I took 4 TBS Milk of Magnesia this morning, plus used 2 Glycerin suppositories. I am to continue using the suppositories daily, and the Milk of Magnesia every 3 days if I still have symptoms. He also told me to go back to eating my normal diet, instead of the baked potatoes and chicken soup that I have eaten almost exclusively since Friday.

So, you know where I have been most of this day. I’m still clearing my throat constantly, and my throat is irritated, but I am not nauseated like I was yesterday morning. I’ll be eating our usual lunch today, and hopefully it will not cause the coughing or nausea to worsen.

Will I ever learn?????

Posted in Symptoms | Tagged Bentyl, bloating, Bowel Retraining, elimination difficulties, gas, Gastroenterologist, GERD, glycerin suppositories, Metamucil, Miralax, nausea, pain, Quality of Life, stomach, swallowing, symptoms | Leave a reply

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