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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: Lodosyn

Tummy in Rebellion

Day by Day with a Movement Disorder Posted on October 2, 2007 by DBOctober 2, 2007 6

Warning: This post is not for the weak stomached!

Today did not go well at all. I followed my list of med times, trying to spread out all the doses as much as possible. I was careful to take the ones that needed to be with food, and the one that needed to be without food at appropriate times.

Before I could finish sipping my hot tea this morning after breakfast, I moved to get up from the sofa to go to the bathroom, and all the liquids I had taken in over the last hour – juice, water, and tea – all came up explosively all over me and the sofa, propelled by all this gas I have. It’s as if my stomach is stopped up at the bottom and couldn’t hold it all. That is called Gastroparesis, which means slowing of the emptying of the stomach, and is quite likely part of my problem. Really, every part of my digestive tract shows signs of weakening, so I shouldn’t be surprised when something like this happens. That didn’t make it any less upsetting, though, as DH had to quickly do a wash before all that acid ruined my clothes, while I took a bath, and we had to try to get our sofa cleaned up, too. And, I’ve stayed nauseated most of the day, just as I did when I tried to take Sinemet last year.

From what I’ve read from other PWP, many people get over the nausea fairly quickly when they start Sinemet, so I sure hope I will be able to tolerate it this time. I was much sicker with the GERD last year when I tried to take it than I am now, so there is reason to be optimistic, which is what I choose to be.

I see my Gastroenterologist tomorrow, and I have an appointment with my Neurologist next Friday, so maybe I will know what needs to be done soon to get the benefit, and not the side effects, of my meds.

Posted in Uncategorized | Tagged gas, GERD, Lodosyn, nausea, Parkinson's, Quality of Life, Requip, Sinemet, Sucralfate, Zelepar | 6 Replies

Day One with Sinemet

Day by Day with a Movement Disorder Posted on October 2, 2007 by DBOctober 2, 2007 6

Yesterday was the first full day of taking Sinemet again, as well as the Requip and Zelepar I was already on. I also had the Lodosyn and Sucralfate I requested from the ER doc, so that the Sinemet had a better chance of not making me so nauseated, the way it did last year. I started the morning hardly able to feed myself or walk, but ended the day almost back to my normal state. That was a huge relief, to say the least!!!

I also talked to my Gastroenterologist last night, but without any real conclusion to my gas and belching problem, or my elimination difficulties. He basically just asked me a lot of questions, most of which I could not give him any clear cut answer to, and told me to go on and make an appointment with him. I told him about the ER trip, and how I had been delaying my Neuro appointment, waiting for a diagnosis. He said to go on and make the Neurologist appointment, so I’ll do that today. The fact that he has taken so long going over all the diary I gave him, plus his obvious quandary as to what is going on, leads me to think that a serious diagnosis is not jumping out at him as likely. That is what I’m going to assume, anyway.

The comical part of all this was trying to figure out a schedule to add in three more meds, taking into account all the restrictions on timing and eating and nearness to other meds that each one has. I finally wrote out today’s schedule, and I’m taking one or more medicines today at 5AM, 6, 7:30, 9, 11, 12, 1:15, 3, 5, 6:30, and 8PM! And that doesn’t count the Myralax that goes on my cereal or the glycerin suppositories I use! You should see the size of my pill boxes!! Oops, my timer just went off…. time to go take medicine LOL!

Well, I’m back. I just took the Sucralfate, a hog pill that I had trouble swallowing yesterday. Last night we cut it in half, but I still choked on it, because it’s so dry going down. So, this morning I soaked the two halves in a tablespoon of water, and swallowed that. That was much easier, although I can still feel the dry scratchiness down my throat. That’s one of my new stomach protector meds, so I have to take it, uncomfortable or not.

Each day is a new adventure with this PD, with some days being hopeful and others being miserable. Thank goodness I don’t often get as down as I was Sunday night. I thank God for that!! And, I thank you for caring enough to say an encouraging word, too, as I surely need it.

Posted in Uncategorized | Tagged choking, depression, difficulty walking, elimination difficulties, gas, Gastroenterologist, God, Lodosyn, Parkinson's, Quality of Life, Requip, Sinemet, stomach, Sucralfate, tremors, Zelepar | 6 Replies

Walking on Jello

Day by Day with a Movement Disorder Posted on September 30, 2007 by DBSeptember 30, 2007 6

The saga of drug interactions continues, evidently. I had a Celestone shot on Thursday to get the poison ivy under control, as a steroid shot always does the trick for me. My regular doctor has given these to me several times in the last few years, so I was not surprised when I woke up very nervous Friday. That’s pretty much par for the course, plus they make it hard for me to sleep, too. So, I tolerated the shakiness Friday, and we continued with our Estate Sale hunting and went to see our younger DD for an overnight stay.

By Saturday morning I was even shakier, but we had a long way to drive home. I kept the way I was feeling to myself, figuring it would go away, and I did feel better after we ate a big breakfast. But, this morning, I was in really bad shape. I was shaking all over and holding on to furniture and the walls to get around. When my hubby got up several hours after me, I was worse. So, I called the Neurologist’s answering service and the doctor on call promptly called me back. After listening to all this, he told me to go to the ER. He said he was concerned it was an infection (I didn’t think so, but?) and they would be able to give me something to stop the tremors. So, we were off for the hour long drive to get to the ER, with DH trying his best not to show just how worried he was about me, and me trying my best to be still.

They took me right away, but it still took quite awhile to get the results from all the blood work they did. They did not find signs of any infection, and concluded, just as I had, that the steroid shot had precipitated this acceleration of my symptoms. So, armed with four prescriptions and orders to see my Neurologist this week, they sent me home.

So, at least for now, I’m back on Sinemet, which is the “Gold Standard” drug for Parkinson’s. Since I was so nauseated with it when I took it for the Sinemet Challenge that confirmed my Parkinson’s diagnosis, I had asked the ER doctor to also give me a prescription for Lodosyn, Carafate, and Phenergan. This is where my journal of everything that has happened since my diagnosis came in handy. I was able to show him in my journal that this is what my own Neurologist had put me on way back in September of 2006, when I got so nauseated with the Sinemet.

So, I’m typing this with a fairly steady hand, with all these extra meds in my system. I have an appointment tomorrow with my Gastroenterologist to find out what he thinks is going on with my digestive tract, and as soon as I know what is going on in that area, I will make an appointment to see my Neurologist.

This whole experience has been very upsetting to say the least, not only for me, but for DH as well. I hate it that he’s having to take care of me the way he’s had to. I hate it that I couldn’t stop myself from shaking. I hate it that the ER guard came immediately, being so very solicitous, wanting to get me a wheelchair, as I was obviously so feeble looking, wobbly cane and all. I hate being this way. Today I got a glimpse of what the future holds. I hate it.

Posted in Uncategorized | Tagged cane, difficulty walking, drug interaction, Friday Date Day, insomnia, Lodosyn, nausea, Neurologist, Parkinson's, prescriptions, Quality of Life, Sinemet, steroids, symptom diary, symptoms, tremors | 6 Replies

Another Great Day!

Day by Day with a Movement Disorder Posted on November 18, 2006 by DBMay 7, 2016  

We had a wonderful Date Day yesterday, with beautiful Fall weather, and some really nice finds at a handful of garage/moving and Estate sales. Because of the direction we headed, DH didn’t have to deal with horrible Friday afternoon traffic when it was time to head home, like he usually does, so that made it even better.

We ate out at a buffet, so I was able to find plenty that I could eat, while he could get what he wanted. I’ve gotten in the habit of taking a couple of Beano caplets before I eat, anytime I even suspect that I’m going to eat something that might produce gas, and that seems to be helping, too. All and all, I seem to be settling into a pretty good idea of how to eat in such a way as to protect my stomach, as things have been pretty calm for several days now.

I wrote to the Ask the Doctor mailing list on the National Parkinson’s Foundation site last week, and my post showed up in the email today. It takes about a week between sending in a question and getting an answer, as these are practicing physicians, who take the time to answer the questions. I had asked the mailing list doctor if he could suggest any meds that I could take in patch form, to bypass my stomach.

The doctor suggested I try the form of Selegiline, called Zelepar, that dissolves under the tongue and bypasses the stomach, and also go back to Sinemet, with a larger dose of Lodocyn. According to him, Requip causes more nausea than Sinemet does. My Dr. S. had said he couldn’t promise that the Requip wouldn’t make me more nauseated, but that he wanted to give it a try.

So, for now, at least, I’ll stick to the Requip, but if the nausea and bloating start up again, I think I’ll make an appointment with the Neurologist for as soon as possible, and see what he says about the Parkinsons’s Foundation Doctor’s suggestion.

Posted in Uncategorized | Tagged Ask the Doctor, Beano, eating out, Friday Date Day, gas, Lodosyn, nausea, Requip, Selegiline, Sinemet, Zelepar | Leave a reply

My Legs Were All but Frozen this Morning

Day by Day with a Movement Disorder Posted on September 25, 2006 by DBSeptember 25, 2006  

It was all I could do to walk this morning, so for the first time ever, I used the cane when I went to fix breakfast for Daddy. Before I was on the medicine, I was able to hold onto furniture and walk enough, so I could hide how bad off I was from Daddy, since his vision is so bad. But I didn’t have a choice this morning. He was upset, but I couldn’t help it. I’ve been gradually telling him what’s going on, so I could keep it from being such a shock, anyway.

Our pharmacy does have voice mail on when they’re not open, so the doctor’s call went through yesterday evening. Trouble is, our pharmacist doesn’t have the medicine and can’t get it until tomorrow. So we checked with a nearby town’s CVS, but they didn’t have a full amount of the prescription. My DH got the prescription, but it took several hours for it to be ready.

We finally got the medicine about 1:00PM, so I took the Sinemet and the Lodosyn together, and I had a baked potato for lunch at 1:30. I dozed a bit, but so far the legs are still very wobbly.

Lodosyn is an additional dose of Carbidopa, added to the Carbidopa that is already in the Sinemet. It does not help with the Parkinson’s symptoms, but it helps control the bad side effects of the Lodopa in the Sinemet, which is what changes into Dopamine in the brain. That helps to replace what the brain is no longer producing.

Posted in Uncategorized | Tagged cane, difficulty walking, Lodosyn, Parkinson's, Sinemet | Leave a reply

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