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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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Showing Improvement

Day by Day with a Movement Disorder Posted on December 23, 2009 by DBMay 19, 2016  

Well, I’ve been on the antibiotics and other meds that my Gastro put me on for over a week now, and I’m beginning to see some improvement. I still have problems with my tummy, but the constant feeling of nausea is gone … and good riddance!

We wrapped all the presents and filled the stockings last night, so we’re all ready to enjoy the next few days with our family. We’ll all be together this Christmas, and that always makes it extra special. Some years we have to share our daughter with her in-laws, which is only fair, but I’m glad she and her hubby will be celebrating with us this year.

We’ve had a particularly rewarding Christmas this year already, helping a large number of families find replacements for lost or bedraggled lovies for Santa to put under their Christmas trees! We’ve received wonderfully excited thank you’s from many of them, and each time one was received it just made this Christmas that much more meaningful. It can’t be said often enough that it really is more enjoyable to give than to receive!!

My hope and prayer is that you have a Christ filled Christmas this year, too!

Posted in Quality of Life | Tagged Christmas, family, Lost Toys Search Service, nausea, stomach | Leave a reply

So THAT’s Why I Wasn’t Getting Better

Day by Day with a Movement Disorder Posted on December 17, 2009 by DBMay 19, 2016  

Well, I had an endoscopy Monday morning, and the pathology report came back yesterday. I have an infection of the stomach lining – Gastritis. So now I’m on antibiotics again, and still taking the Carafate. I decided on my own to drop all the supplements for now, and just take my prescription meds – which is a lot!

I felt lousy yesterday, but I’ve waked up this morning feeling better. I’ll know when I eat breakfast in a bit if the medicine has had a chance to calm down the stomach lining any. They gave me a photo of it when I had the endoscopy, and it looks raw alright, so I can’t expect it to clear up overnight. I sure hope I feel better by Christmas, at least.

I’ve been swamped with requests for help finding lovies in time for Christmas, and I’m sure that has put some stress on me. But it feels so good to help someone find what they could not find on their own that I can’t stop. My inbox was not as full this morning, and it should start slacking off until after Christmas now, as there’s hardly enough time to get anything in time for Santa to deliver it.

I’ve been so busy on the computer, plus really not feeling up to doing any cleaning, that I haven’t put up any Christmas decorations, yet. Hopefully, I can get that done today. All the big presents for our grandchildren have been bought since Thanksgiving (online, of course), so now I need to wrap them. We still need to put some more things in everyone’s stockings, too. That takes the most time of all. All these Christmas doings that still need to be done puts stress on me, too. So I am trying my best to just go with the flow and get done what I can. There have been some years when I was wrapping on Christmas Eve, so I have time yet! LOL

We did go to my Sunday School class’s Christmas party and to the Open House at our preacher’s house for the Deacons and their family, so I’ve had a chance to party a little. I took a sugar free dessert to the party, so I could have something sweet without upsetting my glucose readings. I didn’t feel like eating much, but I enjoyed going.

So, I continue to hope that I will feel better by Christmas, and still trying to get as much done as I feel like doing for now.

Posted in Symptoms, Tests | Tagged Christmas, Gastritis, nausea, stomach | Leave a reply

Not Getting Better Yet

Day by Day with a Movement Disorder Posted on December 9, 2009 by DBMay 19, 2016 3

Well, I’m on my second round of the Carafate, and my digestive system is still not back to normal. So I called my Gastro again and basically asked for an Endoscopy, which I will have on Monday. I’m hoping he will see the cause of this constant nausea and be able to treat it more effectively. It’s been a good six weeks of this unsettled feeling, and I’m ready to be rid of it!

The Myoclonus is behaving itself, at least. I haven’t had many more jerks and facial tics since my Neuro changed my prescription of Primidone to 1 1/2 tablets twice a day. Now if I get cold, which is easy for me to do, that’s another story. I do get the occasional shoulder jerks then. Also, I can tell that my mouth tics are just barely under control, as if they are just waiting for a good reason to start up again. But I can live with the dose I’m on now, and I don’t want to take any more of it than I have to.

Eating out continues to be a challenge with the blood glucose levels. You’d think as many diabetics as there are in the US that restaurants and fast food places would be more diabetes friendly, but they’re not. Well, I guess I’m not really being fair to them, because I would find it easier to eat out if I could eat lettuce, as the vast majority of places do offer salads. I can enjoy a spinach based salad, but not a lettuce one. I’ve probably been off lettuce for the last 20 years or so! Since diabetics can’t have baked potatoes or mashed potatoes, either, that severely limits the sides that I can order in most places. Luckily I like sauteed mushrooms, and can usually get those.

Since I’ve not been feeling well, I’ve not been exercising, either. And the scale shows it, as I have not lost any more weight. We bought ourselves an early Christmas present the other day, though, and maybe that will help. It’s a manual treadmill. I had tried out several motorized versions some time ago, and we agreed that I would not be safe on one of them. With the manual one it’s very easy for me to stop and get off, if I feel like I need to. It’s an extremely simple one, with just the one incline level, so I’m only walking for 2 minutes on it right now. We have the resistance level set to a point that hubby can use it, too. So we’ll leave it there until I build up some leg strength again.

So I’m hopeful that the endoscopy will show what needs to be done to stop the nausea, my blood glucose continues to be under control when we eat at home, and hopefully the treadmill will jump start my weight loss again.

Posted in Symptoms | Tagged blood glucose, diabetes, diet, exercise, nausea, Primidone | 3 Replies

I Jixed It

Day by Day with a Movement Disorder Posted on November 18, 2009 by DBMay 19, 2016 2

Well, I held off saying my tummy was better in my last post, because I thought I would jinx it. Well, I did. When I tried to go back to a more normal diet my tummy started feeling nauseated again. I’ve been on the Align for a week now, and just wasn’t satisfied with the way I’ve been feeling.

So I got an appointment with my Gastro yesterday. He said the Align might take a whole month to help, but that he could give me some things to help now. So I’m on Carafate (generic is Sulcrafate) 1 hour before meals 3 times a day, and I have a Scopalamine patch behind my ear. Surely, the nausea will subside now. I sure hope so.

We ate at the Golden Corral yesterday, and even though this is a huge buffet, I had trouble finding anything I dared to eat. I did get a little mash potatoes, which I would not normally get, because of my diabetes, but I was having trouble filling up my plate, so I took a chance. I even ate a little bit of carrot cake, without the icing. My blood glucose reading was only a little high afterward, so I didn’t do too badly.

My blood glucose readings have been much better than they used to be, since I started limiting my food intake to the blander items that we eat. I’m not eating as much as usual, either. Just don’t feel like it. It’s good to see several days of readings with all of them in the narrow limits my diabetes doctor has given me.

It was interesting that, when I saw my GP as a follow up to the urinary tract infection, my GP says he doesn’t get concerned about glucose readings unless they go over 200, while my diabetes specialist uses 135 as my upper threshold. But then that’s why I’m going to the specialist – he’s much more aggressive. And it may just be my weight loss has finally come close to getting me out of diabetic range. Whatever it is, I’m glad. It’s no fun to try so hard and still see high results.

So today I’m hoping for a better tummy soon, and celebrating the trend of my glucose readings.

Posted in Symptoms | Tagged blood glucose, diet, nausea, Scopalamine, Sucralfate | 2 Replies

Puny

Day by Day with a Movement Disorder Posted on November 11, 2009 by DBMay 21, 2016  

It’s not been a very good last couple of weeks for me. It all started Saturday a week ago when I woke up with a urinary tract infection. I didn’t think trying to tough it out until Monday sounded like a very good idea, since I’m diabetic, so we went to a doc in the box early that morning, and he confirmed my diagnosis.

They gave me a shot of antibiotic, plus a prescription for an oral antibiotic and some kind of urinary tract analgesic that turns urine blue. Also, since I had just finished taking a round of antibiotics for a root canal, they gave me a prescription for Diflucan, so I could deal with the likely yeast problem all those antibiotics would cause.

It took several days before I really felt less pain on urinating, but by then my stomach was upset from all the antibiotics. I started eating less and eating mostly bland foods, so my whole diet has changed. I also had some Greek yogurt and blueberries, thinking that would be good for both the tummy and the potential yeast problem. Nothing I’ve done so far has gotten rid of the nausea, although the diarrhea is under control. For now I’m sipping on diet caffeine free ginger ale.

I talked to my Gastro’s nurse today, and she told me to start taking Align, which is, according to her, the best probiotic I can use. I told her I was taking a generic acidophilus daily anyway, but she said this Align would work better to replace the good bacteria that the antibiotic killed off. She also said to stay away from spicy foods or anything fatty or acidic. I’d already been doing that. But, she said it would be OK to eat the raw vegetables we normally eat for lunch, which I had not been doing.

And then, out of the blue, on Sunday afternoon my mouth started the tics again. My tongue is thrusting, and my lips are involuntarily squirming around. I hate when it does that. By the end of the day my whole face hurts from all the extra movement. This is the first time I’ve had any of these Myoclonus jerks on my face since I went on the Primidone.

I had hoped it would go away on its own overnight, but woke up to the same thing Monday through today. So I took an extra Primidone pill and have been doing that ever since. So far it’s limited the squirming somewhat, but not completely. I’m hoping that when my tummy gets back to normal and I feel better, that the Myoclonus will behave itself again. If not, I’ll have to put in a call to my Neuro.

So I’ve not been having a fun time the last few weeks. I’m still looking forward to Thanksgiving with family, so I’ve just got to get better before then!

Posted in Symptoms | Tagged antibiotics, Essential Myoclonus, nausea, Primidone, probiotics, stomach, urinary tract infection, UTI | 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

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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