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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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Home→Tags Dystonia

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: Dystonia

So How Common Are Myoclonus and Dystonia?

Day by Day with a Movement Disorder Posted on February 13, 2011 by DBMay 17, 2016 12

I had an interesting conversation today after church with the lady who happened to be sitting behind me. She asked me if I was sick, but I knew what she was referring to, so I told her about having uncontrollable jerks and apologized for disturbing her worship. She, of course, said not to worry, but asked what I had. When I told her I had a form of Myoclonus, she told me she had Dystonia! What are the odds of two people sitting that close to each other in a little country church, both with relatively rare Neurological Disorders!!

I tried to do some research to find out just how common these two Neurological Disorders are in the USA, but only found one site that gave a number I actually could understand. Most sites were comparing percentages in different populations all over the world. The WrongDiagnosis.com site listed both Myoclonus and Dystonia as being classified in the USA as Rare Diseases according to the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH), which means no more than 200,000 people have been diagnosed with each of these Movement Disorders in the whole US. There are only about 2,000 people in our town!

I don’t know if she grew up in this town or not, but we’ve only lived here as adults. I do have very serious Neurological diseases in my family history, and I would be very interested in finding out if she does, as well. My interest in where she grew up stems from the fact that our town had at one time the worst EPA rated toxic site in the state!!!

Even though we don’t have the same Disorder (I choose NOT to think of it as a disease!), having someone else I actually know who battles some of the same demons I do was quite a surprise. I look forward to more conversations with her in the future.

So, exactly what is Dystonia, and how is it different from Myoclonus?

The best place on the internet to learn about Neurological Disorders is We Move. They have a forum with sections for each disorder, and I have found the encouragement of other people who comment there who battle Myoclonus to be very helpful and comforting.

This is the overview on We Move of Dystonia:

“Dystonia is a neurologic movement disorder characterized by sustained muscle contractions, usually producing twisting and repetitive movements or abnormal postures or positions. Almost all dystonic movements share a directional quality that is typically sustained, sometimes for an instant, as well as a consistency and predictability Dystonia movements are directional, forcing the involved body part or region into an abnormal position, which is consistently present.”

Put in simple terms, various muscle groups contort in some way and tend to stay that way.

If you saw the TV show “The Doctors” here in the US this week you saw a young woman who had a severe case of Dystonia who was helped tremendously by DBS (Deep Brain Stimulation) brain surgery.

Myoclonus is defined this way:

“The term myoclonus comes from the Greek words for muscle (myo) and tumult (clonus) and refers to sudden, brief, shock-like movements. These movements may be “positive” or “negative.” Positive myoclonus results in contraction of a muscle or multiple muscles. In asterixis, or negative myoclonus, there is a brief loss of muscle tone and then the tightening (contraction) of other muscles; this results in a flapping-type motion. These movements, which cannot by stopped at will (nonsuppressible), often have a characteristic saw-tooth pattern, and they usually disappear during sleep.”

So Myoclonus involves various types of jerking or flapping motions.

Posted in Symptoms | Tagged contracting, Dystonia, Essential Myoclonus, God, jerks, Movement Disorder, myoclonus, Neurological Disease, prevalence, We Move | 12 Replies

Went to my Neurologist yesterday

Day by Day with a Movement Disorder Posted on February 18, 2009 by DBMay 24, 2016  

I saw my Neurologist for my 6 month checkup yesterday and got a few questions answered. I was right that my brain fog is coming from the Primidone, and not from the EM itself. He was also quick to agree with me that the Neurontin had caused the terrible nightmares and grogginess that led me to go back on the Primidone. He said there’s really nothing better that I could take that might not constipate me so badly, and was surprised to see all that I take each day just to keep my digestive system working properly.

I described some specific problems I am having defecating, and he said I am experiencing Dystonia.

We told him how exhausted I get by early evening, and I asked for a prescription for some Physical Therapy, which he quickly gave, so that I could be monitored while I try to increase my exercise level. I may not have a doctor watching me all the time the way they do on the Biggest Loser, but at least I won’t be so scared that I am doing myself harm and will be more likely to push myself a little harder. I have an appointment next week for an evaluation and expect to go several times and then wait several weeks and check in. I’d like to do that all this year if my insurance will allow it.

I did forget to ask him about the dry skin situation I deal with year round, and there’s something else I meant to ask him about, but now I can’t even think of it! LOL!! It will pop into my head when it’s good and ready.

We went out to eat afterward, but it started sleeting just as we got to the restaurant, so we came straight home after we ate.

I’ve gotten behind posting requests for help on the Search Service, since we went to see our younger daughter and her family this weekend. I enjoy seeing them all, and really miss having both our daughters close to us, but trying to sleep anywhere but in a recliner is a real problem for me. It’s taken me the last few days to get my back and neck settled down again. I cut back on my exercises the last few days, since I was waking up with so much back spasm going on. But I did 2 sets of 10 of everything today and used the mini trampoline yesterday and today. Two steps forward and one step back seems to be the norm these days.

So today I have been trying to catch back up with the posts on the Search Service, but it will take awhile to get caught up. I don’t know about other retired people, but I seem to stay busy all day long. I’m not complaining, mind you, as I would be bored out of my skull with nothing to do.

I continue to add to my house cleaning routine, and some parts of the house are actually staying straight most of the time now. Well, notice I said “some”! Certain places seem to be the dumping ground for things I straighten up from other rooms, but don’t know what to do with yet. So some parts are getting consistently cleaner, and others are getting progressively worse. Rome wasn’t built in a day, right?? It took years to make this mess, and it’s going to take time to correct it all.

I’m feeling good about the progress I am making on several fronts, and looking forward to seeing the Physical Therapist next week. Now let me get back to posting!

Posted in Quality of Life | Tagged Dystonia, elimination difficulties, exercise, exhaustion, house cleaning, Neurologist, Neurontin, Physical Therapy, Primidone | Leave a reply

DYSTONIA – One of the untold number of MOVEMENT DISORDERS

Day by Day with a Movement Disorder Posted on August 16, 2008 by DBDecember 17, 2021  

I wanted to pass this comment along, so more people will be aware of Movement Disorders in general, and particularly here about Dystonia.

I am working with the Bachmann-Strauss Dystonia and Parkinson Foundation to ensure that more research is done to find the cure for Dystonia.

Christian Hoff, Tony Award Winner from Jersey Boys, teamed up with The Bachmann-Strauss Foundation to speak out about Dystonia and filmed this video.

Anything you can do to help would be much appreciated, whether it be a story or even just a link to the video. Thank you so much!

Best,
Catherine

Dystonia is not what I have been diagnosed with. The current diagnosis for my Movement Disorder is Essential Myoclonus. I am very fortunate that Primidone does a fairly good job of controlling my symptoms. But I can certainly relate to anyone whose body simply will not do what they want it to do.

I looked through quite a few other YouTube videos, and this one shows a lady living with Dystonia, but I liked the video because it is very positive.

Posted in Myoclonus | Tagged Bachmann-Strauss Dystonia and Parkinson Foundation, cure for Parkinson's Disease, Dystonia, Essential Myoclonus, YouTube | Leave a reply

A NEW Name for My Blog

Day by Day with a Movement Disorder Posted on July 23, 2008 by DBMay 30, 2016  

I have been thinking about changing the name of this blog ever since I was told I did not have Parkinson’s. We were also told that the Peripheral Neuropathy diagnosis was either originally a wrong one, or my nerves had healed. Peripheral nerves can regenerate up to a point, so that may be what happened. Particularly since hubby and I have been doing everything we could to learn about the best foods and best choices among alternative medicines, vitamins, and minerals to assure that I am getting the optimum benefit from everything I put in my mouth.

So, when I started having trouble with Blogger this week, it looked like the ideal time to find a new name for my blog. Who knows what diagnosis they will come up with sometime in the future, so I finally settled on Day by Day with a Movement Disorder. It’s general enough to cover whatever the docs decide to call whatever I have if they change their minds again, and it opens the door for discussing not only the disorder that I have, but other similar disorders.

I have just recently been asked to explain Essential Myoclonus in more detail and also received a request to post something about Dystonia. So I can see that this name may be a good one. I sure hope so. It was not easy erasing that title, after looking at it so many dismal and glorious days. And it will take awhile to change over all the links, etc., that will have to be changed, including a new banner. But it does not all have to be done in one day, that’s for sure!!

Posted in Quality of Life | Tagged diagnosis, diet, Dystonia, Essential Myoclonus, Movement Disorder, myoclonus, nutrition | Leave a reply

Less Computer Time = Getting other things done!

Day by Day with a Movement Disorder Posted on December 28, 2007 by DBJune 1, 2017 15

Well, I have pretty much stuck to my intention to stay away from places where PWP are describing their symptoms. I have visited the PLM site a few times, and even made a few comments, but I have been cautious about the type of posts I opened, to avoid reading about anything tremor related. I have not done any research on PD, either, other than to try to find a correlation between heavy steroid use with Parkinson’s. This was not for my benefit, but for one of my readers, who asked some interesting questions.

My neck continues to be very stiff and painful, but I can put up with it, knowing I will be getting help next week when I start Physical Therapy.

I am pretty much caught up with posting requests for help on the Plush Memories Lost Toys Search Service, and we are over the Christmas rush on eBay. I still need to put a new post on our Yesterday’s Memories blog, and there is always work to do on the BLOG VILLAGE TopList that I run.

So, I have been getting some much needed house clutter cleaning done, but there is plenty more that needs to be done. I would like to have the house straight for the New Year. At least it can start that way LOL.

We did have a great Christmas, seeing all of our family all at once, and enjoying being with our grandchildren. It looks like we actually managed to buy them some things they will enjoy, and that’s not easy to do when they hit those preteen and teen years. They all have birthdays right after Christmas, so we will be seeing them again real soon, too.

Hubby gave me a blender for Christmas, so now I can learn how to make Raw Foods Smoothies, something I have been wanting to try for some time now. Jackie, from The Vegan Diet, clued me into The Raw Food Coach, and since we eat a lot of raw foods, anyway, I have been learning as much as I can about what foods are the best for me. I have been doing a lot of research on the high anti-oxidant Super Foods, and we are gradually changing our diet to include lots of them daily.

We have had a lot of fun at our house of late with trying to get our very spoiled (neurotic) inside cat to accept our two outside cats as occasional inside visitors. They are too young to leave outside all night when it is freezing, so we bought a pet cage for them. They don’t mind being in it at all, which surprised us, but it sure makes going out of town easier. We keep our inside cat in the hall bathroom when we are gone, and now we can keep the outside cats protected, too. Our only problem is that Miss Queen Fluffy doesn’t like having them inside. There have been quite a few fights between Fluffy and Mr. Salt. Miss Pepper stays out of the rough stuff, as she has some kind of nerve damage to one of her hind legs. She is the main reason we decided to bring them in on cold nights and when we are out of town. Fluffy surprised us last night and behaved the whole time they were in the house. Maybe she’s finally adjusting to them, I hope.

One of my anonymous readers has given me a clue as to what my diagnosis might be, if it’s not Parkinson’s. So, I have started doing some research on Dystonia. Also, there was a new post today on PLM discussing Ataxia, and that sounds familiar, too. I already feel better, knowing that there are other conditions that my symptoms seem to fit. It makes me feel less like this is all going to turn out to be psychosomatic. I can’t bear the thought that my body has been going through all this due to an emotional problem. With other possibilities in sight, I am in a much better frame of mind than I was yesterday, thank goodness. So, Marion, the glass is looking more and more like it’s half full, again.

As always, I appreciate your prayers and concern, and love to hear from you, even if it’s just to say HI!

Posted in Uncategorized | Tagged Ataxia, cats, Christmas, diagnosis, difficulty walking, Dystonia, family, hope, house cleaning, muscle spasms, nutrition, pain, Parkinson's, PatientsLikeMe, psychosomatic, symptoms, tremors | 15 Replies

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