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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!

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Beginning to See Slight Improvement as I Go SLOWLY with Triavil

Day by Day with a Movement Disorder Posted on September 18, 2008 by DBMay 25, 2016 2

I am beginning to notice some improvement in my elimination difficulties, so it looks like the Triavil is calming down the erratic muscle spasms in my digestive tract. I’m only on half the dose I should be on, but I’m still being obviously affected by the side effects, so I will continue to go very slowly.

Tomorrow is our Date Day, and we’re going to visit our younger daughter and her family this weekend, so it’s not a good time to try to add the next half of a pill. It can wait until next week, and I will just be careful to follow the Bowel Retraining regimen that my Gastro has me on. Everything is convenient that he has me doing except for the Milk of Magnesia every 3 days as needed. Well, there are times when I need it, but I can’t be home the next day to deal with the consequences!! LOL!!! But other than that, I have been very careful to follow all of his directions.

I am beginning to feel better generally, too. My ulcers must be healing, as I don’t feel that dull pressure pain like I was feeling. I will stay on the restricted diet and continue to eat something with every pill dose until I am sure the ulcerated stomach condition has gone. I don’t have the jaunty step back yet that I had right after I went on the Primidone, but I certainly am moving better than I was for awhile there when the ulcers and antibiotics had me knocked for a loop.

I’m staying busy all day finding lovies for people and selling a few, too. I’ve even felt good enough to start a little housework. I have the greatest hubby in the world, who does everything he can to help me, which means he does the majority of the work around here. So when I feel good enough I do try to help, plus there are a few things he just doesn’t “see” that don’t get done unless I do it, if you know what I mean. ROTFL!!!

Posted in Medicines and Supplements | Tagged Bowel Retraining, elimination difficulties, muscle spasms, Quality of Life, side effects, stomach, stress, Triavil | 2 Replies

Decided to Go Slowly with Triavil

Day by Day with a Movement Disorder Posted on September 13, 2008 by DBMay 25, 2016  

I intentionally waited 24 hours after stopping the Bentyl before starting the Triavil, just as a precaution. As far as I could find the Bentyl has a short half life, so that should have been enough to get it out of my system.

The problem is …. I always try to do as much research as possible with any new medicine I take, and the more I read about the possible side effects of Triavil, otherwise known as Elavil, the less I liked it. By last night I was very upset about it and almost decided to call my Gastro today and tell him I didn’t want to take it.

But I did find that it was used off label for Irritable Bowel Syndrome, and also for Insomnia. He would be prescribing it to me for IBS. I did not like the fact that it is an antidepressant. In fact I got pretty depressed last night just thinking about going on it. I found one place that said that the dose is much lower when used for IBS than for depression, and that did make me feel better.

The PDR said it would possibly make me sleepy, dizzy, or groggy, along with a bunch of other possibles that I don’t even want to write down. So … after much research and a lot of miserable hours I decided to take the night dose right before bed and see how I felt today.

Well, it did make me groggy this morning – that odd medicated feeling that’s not quite woozy, but not quite right, either. That lasted until close to noon, so I will just stay on the night dose for several days and see how I do. Eventually I am supposed to take it 3 times a day. But I’m in no hurry. Tardive Dyskinesia is in the list of possible side effects, and that doesn’t sound good at all!!! So for now it will be no more than 10 mg for me.

As for my digestion? I’m still hurting, and I felt lousy today, but we did go out on our Date Day. We came home early, but I would rather have done that than not go out at all.

Only time will tell how this plays out.

Posted in Medicines and Supplements | Tagged depression, drug interaction, exhaustion, GERD, IBS, insomnia, pain, side effects, stomach, Tardive Dyskinesia, Triavil | Leave a reply

Changing from Bentyl to Triavil for Digestive System

Day by Day with a Movement Disorder Posted on September 11, 2008 by DBNovember 20, 2016  

You may remember when my pharmacist caught what would have been a potentially fatal drug interaction some months ago, when I was still on Parkinson’s meds. At that time my Gastro was searching for some way to help my digestive system to work properly. He had prescribed Triavil, but ended up putting me on Bentyl instead. I have been taking it four times a day ever since. It worked well until I started on the Primidone, but I have had increasing and persistent digestive problems ever since.

He put me back on the strict Bowel Retraining program, limited my food choices even more, put me on the high powered PrevPak to heal the ulcerated stomach that the Endoscocpy found, and expected me to improve. I didn’t. Then he tried a week of some new med called Alinia, but still not any real improvement.

So today, since I am no longer on the PD meds that contraindicated it, I start on Triavil.

It might help if I explained how all this tummy trouble is related to the Movement Disorder. When I am not on medicine for it, it’s real easy to see the uncontrolled movements of various skeletal muscle groups. The twitches, jerks, shakes, tremors, and awkward gait could not possibly be ignored.

But what cannot be seen is what is happening inside me. If I try to stick out my tongue, even now that I am on medicine, you see that it is in constant motion. The same thing is true of throat muscles. Sometimes I can hear the click of the soft palate spasms, and I really didn’t realize that this was anything unusual. I have always had times when I could hear that click. Then come the muscles in the esophagus, that should rhythmically move food down to the stomach, where coordinated muscle action churns the food, passing it on to the small intestines. After the coordinated movements of peristalsis push the undigested food into the colon, the body removes the liquid and eventually we eliminate the solid waste, again using coordinated muscle movements.

Gee, did you notice my intentional use of the word coordinated??? Well, mine AIN’T!!!! It’s no wonder I have GERD, stomach cramps, bloating, gas, constipation, and even problems using rectal muscles properly.

So the Neurologist helps with the skeletal muscle problems, but it’s my Gastroenterologist who helps me with all these internal muscle problems. He has found the right combination to keep me comfortable before, and I am confident that he will this time, too.

Posted in Medicines and Supplements | Tagged bloating, Bowel Retraining, coordination, drug interaction, elimination difficulties, Essential Myoclonus, Gastroenterologist, GERD, muscle spasms, pharmacist, Primidone, stomach, tremors, Triavil | Leave a reply

Tryng a Different Antibiotic for a Week

Day by Day with a Movement Disorder Posted on September 4, 2008 by DBMay 25, 2016 2

I went back to my Gastroenterologist yesterday, thanks to being worked in. He wants to try me on a new antibiotic that I had never heard of, called Alinia, that targets organisms in the upper intestinal tract. He says if this works I should feel better within a week.

He was relieved when I told him that the horrible throat tickle seemed to be improving. I explained about the old diagnosis of Functional Dysphonia I had been given a long time ago, while I was still teaching. Basically the ENT said that stress was causing me to tighten up my vocal chords to the point that it was difficult to speak at all. He gave me some relaxation techniques and speech tips to help at that time, put me on a muscle relaxant, and sent me on my way for 2 weeks of voice rest. He left me feeling like it was my fault, and I was ashamed and embarrassed to tell anyone about it.

I can look back now and realize that it was the Myoclonus showing up, because of excessive voice use and stress. I no longer view that episode as having been “all in my head” and have stopped blaming myself for it.

Anyway, when the Gastro assured me that the Endoscopy showed no sign of inflammation in the esophagus, I had to start thinking of what else it could be. And that’s when I remembered the yawning and starting words with a breathy sound that the ENT had taught me. I talked way down low in a May West kind of voice for a few days, and it did get better. I have only had that gagging tickle a few times since then.

When you have ALS in your family history any kind of apparent muscle weakening is of concern, so he is as relieved as we are that this symptom seems to be improving.

I will start on the Alinia today, since our little pharmacy had to order it, and we will see how it goes.

We passed our 100,000th visitor to our Lost Toys Search Service blog yesterday, so I’m celebrating that milestone. At the rate we are going it won’t take anywhere near three years to get the next 100,000 visits. The popularity of the site continues to grow exponentially, with each happy family spreading the word. So that keeps me busy in a positive way. I credit it with helping me to overcome the depression that often sets in when I feel so yucky.

So … yucky tummy … but staying busy and trying to stay positive!

Posted in Medicines and Supplements | Tagged Alinia, bloating, depression, Functional Dysphonia, nausea, pain, Quality of Life, relaxation, stomach, stress | 2 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

Today is My Last Day on the High Powered Ulcer Antibiotics

Day by Day with a Movement Disorder Posted on August 24, 2008 by DBMay 25, 2016 2

I have been counting the days until this Prevpac was finished, because the strong antibiotics have sapped my energy something terrible. My tummy is still tender and I get very uncomfortable after anything, even water, is swallowed. So I don’t think the ulceration in my lower stomach is healed yet. I have felt a little better since I started eating a little something with each medicine dose, and I spread my meds back out over the day the way they used to be. I’m hoping that will keep my stomach from getting irritated and inflamed so badly again.

I am blaming this on the stress that the Clonazepam put me under, plus I have a long standing problem with GERD and have had ulcers before. I have not felt like exercising for a long time now, and I know that I need to, whether I feel like it or not. But the thought of moving is just so overwhelming. There are days when everything seems like such an effort. It’s hard to explain, but sometimes the thought of even getting up to go get a drink of water seems to be too much.

I’m not really depressed, the way I was with the Clonazepam, but just totally wiped out physically, which leaves me low on brain power, too.

So I am celebrating that this is my last day of this stuff and hoping that I see some improvement in my digestion this next week. If I don’t I’ll have to call the Gastro’s nurse, and I suspect he will put me back on another two weeks of this stuff. That’s what happened the last time I had an ulcer.

As for the jerking and tics, I am doing just fine. I have them more as the day goes on, but nothing at all like they used to be. I still startle in an odd way over the least little thing. My body seems to paralyze for a moment, my eyelids flutter, and everything goes blank for a second or two. Then I come out of it and usually realize that whatever startled me was trivial.

I have been able to use the relaxation techniques I learned a long time ago when I was being treated for Functional Dysphonia. I am using the low register of my voice, instead of allowing it to be the high pitched “female” voice. I have sung alto since elementary school, so that is a good indication that my speaking voice should probably be lower than what I normally use. Making a conscious effort to breath at the beginning of make a sound and letting it come from down deep has taken a lot of the strain off of my vocal chords, so I am not choking and gagging with a horrible tickle all the time any more. This was obviously stress induced, and that means I can control it to a great extent.

So once again I choose to look for the positive improvements I have made and hope and pray for continued good progress.

Posted in Quality of Life | Tagged bloating, brain fog, choking, Clonazepam, coughing, depression, exercise, exhaustion, gas, Gastritis, Gastroenterologist, GERD, pain, Prevpac, Quality of Life, startle reflex, stomach, stress | 2 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

Now on Antibiotics for Stomach Inflamation

Day by Day with a Movement Disorder Posted on August 11, 2008 by DBMay 30, 2016  

We received the answering machine message Friday that the Endoscopy biopsies were all good, but did not get a chance to talk to the nurse about what my Gastro had found. So I called first thing this morning, and he is putting me on the pre-packaged set of antibiotics and acid reducer pills normally used with ulcers.

She did say my stomach lining is very inflamed, but she never actually used the word “ulcer”, so I’m assuming it falls more under the term Gastritis. I will have to do the research again on Primidone, because my Neuro said he had never heard of that as a possible side effect.

I do know that Primidone headed me in the direction of constipation as soon as I started taking it, so I was blaming the tummy problems on it. But as bad a reaction as I had to the Clonazepam, it could be that it was that medicine that inflamed the tummy, and I just felt too miserable to realize my tummy was getting worse.

Regardless of where the blame should be, I now have a treatment plan to deal with it. I also remembered to ask her if it was OK for me to continue to drink the decaf versions of all the High Anti-Oxidant teas that I get each day. Hubby is poking a cup at me all day long! LOL!!! But it’s part of our Super Nutrition routine that I am glad to continue. Some days I get as many as a dozen cups of various herbal teas. As you might imagine, I get a lot of exercise just going back and forth to and from the bathroom!

Posted in Medicines and Supplements | Tagged bloating, Clonazepam, diagnosis, diet, elimination difficulties, endoscopy, Gastritis, Gastroenterologist, nausea, nutrition, pain, Primidone, Quality of Life, stomach, symptoms | Leave a reply

Had an Endoscopy Today

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

My Gastro’s nurse called right at 5PM Friday afternoon to tell me that he wanted to do an Endoscopy on Monday, since I was still nauseated, with a yucky acid taste in my mouth, abdominal pain, and coughing fits after swallowing (NOT choking). He had expected me to be much better after going back on the full Bowel Retraining regimen this week.

Talk about hurry up!!! As luck would have it, the Outpatient Services place was closed when I called. I was able to find a place online where I could pre-register, but we had absolutely no idea what time my appointment was, since I did not get to talk to anyone.

So, we got up at 4:30AM today, headed into town, and just showed up there at 6AM when they opened. We went prepared with a whole bag of books, Sudoku puzzles, and magazines, fully expecting to have to wait no telling how long before they could work us in, but it all worked out OK! We were taken at 7AM and were out of there by 10:30!!

He did not find anything obviously wrong with the esophagus, but he did take a biopsy. And he suggested I see my ENT, as they might find something he did not.

My stomach was another matter, however. He could not tell for sure if it is irritated by my meds or if there is an infection, but the lining is definitely inflamed. He biopsied there, too, and told me to stay on the strict ulcer/GERD diet until I get the test results. And for the first time ever of the many times hubby and I have had Endoscopies, we came home with a printout of the “impressions” as to what he suspects the problem is AND photos!! I have lots of medical terms to research now, which I enjoy doing, as I always learn something of value – even if the possible diagnoses don’t turn out to be what is wrong with me.

We stopped and had a nice breakfast and I slept most of the way home, and other than a slightly sore throat, I am doing just fine. Of course I am on el blando diet right now.

I should find out some results by the end of the week, and certainly by sometime next week. It’s just a relief to have the test done and again chase away that nagging little demon sitting on my shoulder who whispers to me to raise doubts about whether I am really just a complainer and that there’s nothing really wrong with me.

Posted in Tests | Tagged Bowel Retraining, coughing, endoscopy, Gastroenterologist, GERD, nausea, pain, stomach | Leave a reply

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

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