↓
 
Some posts contain affiliate links, marked with an asterisk *
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

  • About Me – My MITO Story
  • Privacy Policy
  • Contact Us
Home→Tags Neurological Disease

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: Neurological Disease

3 Hours of Tests Today

Day by Day with a Movement Disorder Posted on October 27, 2011 by DBMay 18, 2016 4

The Bradykinesia (slow walking) continues, so today I went to UAB in Birmingham and had a Nerve Conduction Velocity Test, a complete Jolly’s Test, and an EMG (Electromyogram). It took 3 hours to complete all the testing, and that involved some fairly uncomfortable electrical stimulation in the Nerve Conduction Test and some very uncomfortable electrical shocks during the Jolly Test. The EMG is mildly uncomfortable, but they did that last, and by then I was so stressed and tired that it was not pleasant, either.

I’ve had variations of these tests before, so at least I knew about what to expect. I’m glad I didn’t realize ahead of time that I was having the Jolly Test, as it was extremely painful last time. It still wasn’t easy, but it wasn’t as bad as it was the first time I had it done. This test was more complete than the other Jolly Test I had, testing the eyelid muscles, the neck muscles, as well as the hand and arm muscles. The NCVT was done on my right leg and arm, as was the EMG.

A technician did the NCVT and Jolly Test, but two doctors did the EMG. They said the NCVT and Jolly Test looked normal, but the EMG showed signs of polyphasia. I tried researching that, but couldn’t tell much about what that meant, and of course they didn’t elaborate. They said it would be up to the Neuromuscular Specialist to decide if I needed a muscle biopsy, based on the results of these tests.

So, we still don’t know anything, but maybe in a couple of weeks we’ll get some indication of what the specialist thinks might be going on. We sure hope so.

Posted in Tests | Tagged Bradykinesia, difficulty walking, EMG, Jolly's Test, muscle biopsy, Nerve Conduction Velocity Test, Neurological Disease, Neuromuscular, polyphasia, UAB | 4 Replies

The Long Awaited Appointment

Day by Day with a Movement Disorder Posted on October 9, 2011 by DBMay 18, 2016 10

We’ve waited several months for an appointment to see the Neuromuscular Specialist at UAB, and I finally saw him Friday. We had spent the better part of a week going from doctor to doctor collecting every medical record we could to either FAX to them or bring with us. I had updated all my own medical history information that I keep on my computer and took that with me, too. All the paperwork made a stack over an inch high.

The doctor was very pleasant, but his English was difficult to understand, and at times I think he was having difficulty understanding me. He asked a lot of questions, did a very brief test of muscle strength, walking, and balance abilities. He gave me a prescription for Lyrica, which he said would help with the muscle weakness and fatigue. And he ordered an EMG. That’s the test where they put needles in your legs and measure the electrical signal between the needles to see if the muscles are working properly. I’ve had that test done twice – one was abnormal and one was normal – but that was some years ago. He also mentioned I might need a muscle biopsy. 

And that was it.

We left feeling like nothing had been accomplished. I have to wait on them to mail me the appointment time for the EMG, so I don’t know how long it will be before that’s done. And the doctor’s office won’t decide when to see me again until the EMG has been analyzed, so that’s up in the air, too.

And now I’m taking the Lyrica, which is leaving me so looped that you would think I was drunk! I’ll give it a few more days to see if these initial side effects wear off, but there’s no way I can take it if this continues. It’s an anti-seizure medicine, just as my Primidone was, but I’m not having the Myoclonic jerks any more. I told the doctor that several times, but each time he would say that it would help with the weakness and fatigue. 

I wish I could say I had confidence in him at this time, but I don’t right now. Very frustrating, as I’m sure he’s a top notch doctor – he wouldn’t be at UAB if he weren’t. It’s the language situation that makes me feel doubtful. 

So I continue to walk slowly and awkwardly, and now I’m drunk to boot! LOL!! And disappointed, although I knew they would want to do more tests – they always do. It’s just been a long year of doctor visits and tests and more tests, and we’re no closer to finding out what’s going on with me than we were back in April.

Posted in Tests | Tagged difficulty walking, EMG, Lyrica, Movement Disorder, Neurological Disease, tests, weakness | 10 Replies

I Know Lots of Ailments I DON’T Have!

Day by Day with a Movement Disorder Posted on September 24, 2011 by DBMay 18, 2016 6

Since all this weakness started in March I’ve been tested for just about everything you can think of. I’ve been tested for Myasthenia Gravis, Hemochromatosis; Lyme Disease; Thyroid problems, including an Ultrasound of my thyroid; had a Liver Ultrasound and a Biopsy; and had an Echo-cardiogram, an ABI to test for circulation in my legs, and a Nuclear Stress Test. All these tests came back with a clean bill of health.

We are very thankful that so many of the really scary possibilities have been eliminated.

But I’m not through with the testing yet, as my liver enzymes continue to be high, and the Creatine Kinase test I’ve had twice now shows elevated MB enzymes. That’s why I had a complete cardiac workup. I have read online that neuromuscular disorders can cause high MB results, not just damaged heart muscle, but my Cardiologist wanted to rule out any heart involvement.

I told the Cardiologist I really didn’t think it was my heart, but I’ll admit that hubby and I were both very relieved when the results came back OK yesterday.

So now I wait for my October appointment with the Neuromuscular super specialist at UAB. We’re busy collecting all the test results and CD’s from the various tests I’ve had over the last few months.And I’ve been keeping a diary, too. These specialists are very difficult to get to see, and I want to be sure the appointment is as productive as possible.

I still don’t walk very well, and I tire out very easily, but the Essential Myoclonus continues to be basically nonexistent. So we’re praying that the UAB specialist will be able to pinpoint the problem and help us deal with it.

Posted in Tests | Tagged ABI, Creatine Kinase, Echocardiogram, Hemochromatosis, Hypothyroid, liver biopsy, liver enzymes, Lyme Disease, MB, Myasthenia Gravis, Neurological Disease, Stress Test, ultrasound, weakness | 6 Replies

Still Being Poked, but Optimistic

Day by Day with a Movement Disorder Posted on September 7, 2011 by DBMay 18, 2016 4

Well, I was hoping to wait until I had something definite to add, but it looks like that’s not going to happen any time soon. Since I’ve written last I’ve had two more sets of liver enzyme tests with varying results, but still high. I’ve been to the Endocrinologist, and he’s run all the thyroid tests again and done an ultrasound of my thyroid.  He is satisfied that all is normal there. The liver biopsy results came back normal. So far so good.

But, I asked at my last Gastro visit if muscle atrophy could cause the liver enzyme numbers to be high, based on some information I found on the internet. So he added a Creatine Kinase test to the orders for the liver function panel, and the CK numbers were elevated. I’m not sure yet what that means, as I’m having a routine colonoscopy this week and won’t see my Gastro again until the followup appointment for that.

I’ve decided that the variation in AST and ALT numbers I keep getting is determined by how much walking I’ve done prior to the test. When I had to walk a long way to the lab the numbers have been higher than when it was close by. I really do think all the abnormal numbers have something to do with whatever is making my walking so labored and oddly gaited.

I have a feeling I won’t get any answers until I see the Neuromuscular Movement Disorder Specialist at UAB in October. But at least we’ve ruled out several things that could have caused this weakness.

I’ve finally reached a point that I’m no longer worried about them finding some horrible something wrong with me, and I’m very thankful for that. I am not as weak as I was back in March when this all started, and I’m VERY thankful for that. I feel good enough to have made a dent in the backlog of work that accumulated when I was so very weak, and that helps my outlook, too.

I’m thankful to God that most of the scariest possibilities have been ruled out, and I’m no longer anxious about the final results of all this testing.

Posted in Tests | Tagged Creatine Kinase, difficulty walking, Endocrinologist, gait, liver biopsy, liver enzymes, MDS, Movement Disorder, Neurological Disease, thyroid, weakness | 4 Replies

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

Recent Posts

  • Mitochondrial Disease Treatment in Phase 3 Trial October 21, 2019
  • God’s Healing Sunlight March 31, 2018
  • Immune System Issues, Slowly Recuperating January 25, 2018
  • Flu Shot? Yes or No? December 20, 2017
  • Nutrition Information Sources December 14, 2017

Archives

Tags

balance blood glucose brain fog care giving depression diabetes diagnosis diet difficulty walking elimination difficulties Essential Myoclonus exercise exhaustion Friday Date Day gait gas Gastroenterologist GERD God insomnia MITO Mitochondrial Myopathy Movement Disorder muscle spasms nausea Neurologist nutrition pain Parkinson's peripheral neuropathy Physical Therapy prayer prescriptions Primidone PWP Quality of Life Requip Sinemet Sleep Apnea stomach stress symptoms tremors weakness Zelepar

Our Websites

  • Dirty Butter – Cherished Memories Dirty Butter – Cherished Memories
  • Dirty Butter Plush Animal Shoppe Dirty Butter Plush Animal Shoppe
  • Plush Memories Lost Toy Search Service Plush Memories Lost Toy Search Service
  • Yesterday's Memories Yesterday's Memories

Blog Friends

  • A Catholic Life – A Family Dealing with MITO
  • Anuket's Crusade
  • Baby Food Steps
  • Gilbert Guide Blog
  • Gimp Parade
  • GodsPlans
  • Leafing
  • Life According to Liz
  • Life with Shaky
  • Living in the Slow Lane
  • Mito Families!
  • Mozart Movement
  • My Father's Hand
  • My Life as a Mighty Mito Mama
  • My Own Arcadia – Spanish Language Blog with Parkinson's Information
  • Parkinson's Straight from the Horse's Mouth
  • Parkinsonism – Road to Diagnosis
  • Patients Like Me (All Kinds of Diseases)
  • PD Plus Me
  • Princess Leah Diaries
  • Shake, Rattle, and Roll
  • Taking Baby(food) Steps
  • Today with Pokie Too and PD
  • Wheelie Catholic
  • YOPD

Mitochondrial Myopathy Resources

  • Correcting Human Mitochondrial Mutations
  • mitoACTION
  • Mitochondria Research Society
  • Mitochondrial Bottleneck Cracked
  • Mitochondrial Cytopathy in Adults
  • Mitochondrial Myopathy Disease Foundation
  • Mitochondrial Vitamin Cocktail – A Guide for Patients
  • Muscular Dystrophy Association
  • NIH – Monkey DNA Swap May Block Mitochondrial Disease
  • Overview of MELAS
  • Research Match
  • Scientific American Article about Using Glutathione as a Marker
  • UAB Researchers Explore the Mystery of Mitochondria
  • When Cells Face an Energy Crisis

Nutrition Resources

  • Keto Calculator
  • Ketogenic Diet Resources
  • Maria Mind Body Health
  • Treating Constipation without Destroying Your Gut

Products I Use

  • The Energy Blueprint
  • Satori Qigong Flow Form
  • RubyLux NIR-A Infrared Bulb

Parkinson's Disease Resources

  • Parkinson's and Movement Disorders Center
  • The Brain from Top to Bottom

Peripheral Neuropathy Resources

  • About.com Guide to Peripheral Neuropathy
  • An Algorithm for the Evaluation of Peripheral Neuropathy
  • Brain Tumor Dictionary
  • Charcot-Marie-Tooth Association CMTA
  • How to Choose and Use a Walker
  • Jack Miller Center for Peripheral Neuropathy
  • Peripheral Neuropathy Fact Sheet

Radial Neuropathy Resources

  • The Wrist Drop of Saturday Night

Subcribe to Our Feed

©2022 - Day by Day with a Movement Disorder - Weaver Xtreme Theme Privacy Policy
↑
Translate »