Tag Archives: Essential Myoclonus

Liver Test Results Still Abnormal = Liver Biopsy

Day by Day with a Movement Disorder Posted on July 21, 2011 by 7

My liver enzymes tests came back abnormal again, higher than they have been, so I had a liver biopsy this morning. It will take about a week to get the results.

We had read online about what the procedure would be like, but what they actually did was a good bit different. And I’m still hurting, although not as bad as I was right afterwards. I’m still not able to take a full breath without a sharp pain at the entry point. If feels like I’m getting stabbed every time I inhale with any breath that’s not shallow. Morphine and Lortab barely cut it at the hospital, and they’ve long since worn off. I don’t want to take Tylenol, as I think it would be a waste of time. If I’m still hurting this much tomorrow, I’ll call my Gastro and ask for a prescription.

I’m guessing that my diaphragm is having myoclonic jerks from the irritation to the nerves in the diaphragm. And of course I’m not taking any Myoclonus meds now.

We’re praying that the results of this procedure will give a definitive answer as to whether or not I have any kind of liver damage. Reading all the side effects that the various meds I’ve been on and off for the last six years, it wouldn’t be too surprising if I had Drug Induced Liver Disease. Or it could be Fatty Liver Disease, as I used to weigh 182 pounds. I’m a small boned 5 foot 2 inch lady, so I was way overweight up until about a year ago.

My Neuro is waiting for all these liver tests to be dealt with before he will proceed with referring me back to the Movement Disorder Specialist at UAB. He’s the Head of Neurology there at one of the best diagnostic hospitals in the USA. He’s the one who gave the dx of Essential Myoclonus. But now I’m not jerking and almost too weak to walk.

I also have an Endocrinologist appointment next month. So I’ll see him, if the liver biopsies come back as normal, to check for thyroid problems.

Dr. House, Where ARE you???????

Please keep us and my doctors in your prayers. We need an answer.

Limbo Land is No Fun!

Day by Day with a Movement Disorder Posted on June 24, 2011 by 4

Well, the blood test came back normal, as did the Jolly test. I’m still having all the same weakness, gait problems, and hoarseness, though. From what I’ve been able to research on Google, neither of these tests is totally reliable, so I’m not ready to breathe a sigh of relief just yet.

I have asked that my Neuro refer me to a particular Endocrinologist, though, so maybe I can get an appointment with him next week. Well, I mean get the authority to make an appointment next week. No telling how long I’ll have to wait to actually SEE him.

Hubby and I are hoping I turn out to be Hypothyroid, as all my symptoms fit that disorder, and our daughter takes medication for it. All my thyroid tests were normal, but that doesn’t mean I don’t have a thyroid disorder. THAT would be easy to fix with medication, so we’re hoping that’s it.

I’ve all but quit jerking, too, even though I cut the Primidone from 3 at a time to 2 at a time, so I lowered it to one tablet morning and night yesterday, and I’m still not jerking. Very weird.

It sure would be nice and neat if medical tests were 100% accurate in every case, but this is real life. There are always exceptions.

Disk & Muscle Spasms Rear Their Ugly Head

Day by Day with a Movement Disorder Posted on March 26, 2011 by 2

For the first time in quite a few years, I’ve been having real problems with my neck and back for the last couple of weeks. It seems to get worse as the day progresses, so by the afternoon and particularly at night I’m really not comfortable at all.

I’ve tried Tylenol and Aleve, but I can’t even tell I’m taking them. I’ve also been having constipation problems again, so I’ve been reluctant to ask one of my doctors for a powerful pain med, knowing strong pain meds would just make the constipation worse.

I’ve been thinking the pain spasms would clear up on their own if I gave it some time. I’ve tried to keep moving my neck and shoulders as much as I can, used the hot pad, and have been using the inflatable neck brace for a short time each morning. It’s way too uncomfortable to use it for very long, but it’s extremely adjustable, and I have all the Velcro sections pretty well suited to my short neck. After I put it on I pump up the bladder in it and it gives a little traction. That helps for awhile, but it’s way too painful to use it after the spasms take over later on in the day.

The human adult head weighs about 10 pounds, and the neck and shoulder muscles have to be strong enough to carry that weight around in all kinds of positions all day long. Just imagine how long your arm would last without fatigue and pain if you were to lift a 10 pound bag of potatoes for 12 straight hours! Normally, our bodies are so wonderfully made that we don’t give it a second thought.

But I have Degenerative Disk Disease and Osteopenia, which means my disks and bones are not as healthy as they should be. I’ve had bulging disks in my neck and lower back for many, many years. So I guess I was overdue for a round of pain with one or the other. This time it’s the Cervical disk that seems to be the focus.

I’m not sure, but the Myoclonus may be making the spasms worse. I was in quite a quandary as to which doctor I should go see, my Neurologist or my Orthopedist. The trigger points seem to be on the right side, not near my left shoulder that does all the jerking, so I’ve decided the Orthopedist makes more sense.

So, it looks like I will be making an appointment with my Orthopedist next week.

Removing the Mystery: Top 49 Blogs about Parkinson’s

Day by Day with a Movement Disorder Posted on February 24, 2011 by 4

We were notified today that our blog has been included in what appears to be a very good list of blogs and news sites about Parkinson’s and Movement Disorders, from not only the patient’s perspective, but also from caregivers and physicians.

A lot of these blogs and resources are already listed on my sidebar here, and I will be adding some more, I’m sure, as I have time to check them all out.

It feels good to be validated for what I’ve tried to accomplish here over the years – from when I was first diagnosed with Parkinson’s Disease, to the change in diagnosis to Essential Myoclonus, and then the addition of Type II Diabetes and being a care giver to the mix. During that time I’ve tried to write honestly about my emotional state and the problems I’ve had with side effects from the medications and my symptoms.

I want to say a sincere thank you to those of you who have encouraged me along the way with your comments and prayers.

So How Common Are Myoclonus and Dystonia?

Day by Day with a Movement Disorder Posted on February 13, 2011 by 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.

Half-Life, What Is It?

Day by Day with a Movement Disorder Posted on February 2, 2011 by 12

I’ve been on the twice a day dose of Lamotrigine now for about 2 weeks, and hubby and I see some improvement, with less jerking and less depression. As this medicine builds up in my system, thanks to its half-life, I can hope for even better control of the jerks and an even happier outlook in general.

Lamotrigine has a half-life of 13 hours. That means half of the 7AM dose is still in my system when I take my 7PM pill. And half of what is left in my system at night from the 7AM dose, plus half of the 7PM dose, is still in my system at 7AM the next morning when I take another dose. Confusing?? LOL!

What that means is that over a period of time it builds up in my system. The Primidone I take does the same thing. My brain is constantly bathed with these chemicals that somehow calm the erratic electrical activity that sets my muscles to jerking. Neurologists don’t really understand the mechanism by which these chemicals work in the brain, so they just have to keep trying different meds until they hit on the right combination for each patient, based on their years of experience dealing with Movement Disorders. All the meds in their arsenal are off label drugs. That means they are not typically prescribed for Myoclonus. Most are used to control epileptic seizures and some are normally prescribed for depression.

In my case my Neurologist says I have a progressive form of Essential Myoclonus, so I am thankful for the relief I get with a new medicine, even though I realize it may not be sufficient sometime in the future. But my outlook is better these days, so I choose to be happy with the apparent success of this combination and to not dwell on the future. See, I told you I was feeling better!

I thank God for this lifting of the gloom I have been in, as He guides the decisions my Neurologist makes in treating me!

4 Days of Full Lamotrigine Dose

Day by Day with a Movement Disorder Posted on January 24, 2011 by 4

I’ve been on the Lamotrigine morning and afternoon 25mg dose for 4 days now, and only the first morning caused me any problems. I went back to sleep after breakfast on that first morning I took a morning dose, and I slept almost 3 hours. That is an extremely unusual thing for me to do. But I haven’t been sleepy since then. It may be helping a little bit, but nothing spectacular. I’m still jerking pretty badly if I’m under even the least amount of stress, which seems to be a lot of late.

One of my triggers seems to be getting in any kind of a crowd, so Church is always very stressful for me. I’m very self conscious about the jerking, and I feel bad for the people who sit behind me, as it must be very distracting.

But I’m not zonked on it, as I was when the Neurontin dose was increased. That’s a good thing. And I know I’m on the smallest dose size the Lamotrigine comes in, so there may be some room for adjustment to lessen the jerks a little bit more. I’m hoping that’s the way it will work out, without putting me in a daze the way the Neurontin did.

I don’t think I’ve ever really explained what the Primidone and Lamotrigine prescriptions are for. They are actually used as anti-seizure meds, and the Lamotrigine can be used with Bipolar Disorders and Depression disorders. The Clonazepam the MDS tried me on first, as well as the Neurontin, were also meds used for seizures and depressive disorders. (Which I thought made it odd that they depressed me!) So it’s kind of like taking a pig in the poke for medicine.

Their use for Essential Myoclonus is considered an off-label use, and from everything I’ve been able to read, the medical profession really doesn’t understand how these meds work in the brain. Evidently when they work properly they calm down whatever erratic electrical signal there is that’s coming from my brain that sets off these muscle spasms.

This is where having a Neurologist I trust is so very important, and a pharmacist who watches over every medicine I take, prescription as well as over the counter. I wouldn’t think of buying some of my prescriptions at one pharmacy and others somewhere else. It’s just too dangerous for me.

So I’m trying hard to be hopeful that my Neuro will find a good balance on my medicines and get me back to where I’m not jerking so much. And I’m fighting the blues, although I certainly haven’t won that battle yet.

Having Problems with Depakote Blues

Day by Day with a Movement Disorder Posted on January 4, 2011 by 2

My jerking and twitching have definitely improved since I started taking the Depakote in addition to my Primidone, but as the jerking lessened my blues increased. I seem to be on the verge of tears constantly, and I’m more irritable, too. So, I took myself off one of the Depakote doses – the one at night. I’m not sure if that is going to work, as it took some time to start seeing the good results jerk-wise from the Depakote.

I have a Neurologist appointment later this month, so we’ll see if he agrees with my choice to cut the dose or fusses at me for doing it on my own. Right now I’m miserable enough that I don’t care what he thinks. I’ve just got to do something to feel better, even if it means going back to the jerks.

I know it’s the New Year, and I should be all positive about 2011, but right now I’m just not in a positive mood. Sorry for dumping my mood on you. I pray it won’t last much longer.

Praying the Depakote Works

Day by Day with a Movement Disorder Posted on December 3, 2010 by 2

I heard from my Neurologist Wednesday, and he’s trying me on Depakote, instead of the Neurontin. So far I’m not groggy, but I’m still jerking. Hopefully not as bad as I was, though. Today should be the test of it, as it’s had time to get fully into my system now. So, we’ll just wait and see. It does have some possible side effects that aren’t good, such as weight gain, so I’ll have to start weighing regularly again. And watch what I eat, too, as I had been splurging a good bit lately. But I’m not counting Thanksgiving.

It’s strange how they attempt to medicate the symptoms of Essential Myoclonus. Both of my meds, Primidone and Depakote, as well as the Neurontin he took me off of, are anti-seizure meds. But the EEG showed that I’m not having seizures. They really don’t know how these meds work for some people, and for that matter they don’t know what causes EM, either.

We had an enjoyable Date Day yesterday, going to the Galleria and walking around, mostly to see the Christmas decorations. But it’s not like it used to be. There were only token, if any, decorations in the stores, and they didn’t have a Santa in the mall, either. It’s sad to see how “politically correct” everyone’s become, but they sure want our money! But the mall itself was pretty, and the walking was good for me. And we did get some shopping done, but not at the Galleria! Hurray for “dollar stores” (I can remember when they were 10 cent stores)!!

I’ll try to get some more housework done today, and I’m praying that the Depakote works. My walking is still very unsteady, but that may be from lack of enough exercise. Might as well get a clean house while I build a few muscles, eh?

I hope you all had a wonderful Thanksgiving, as we sure did. And I’m thankful that my Neurologist does have some choices for meds to try for me. I pray that he finds the one that stops the jerking.

Thanks be to God for all his unspeakable gifts! He has blessed us in so many ways, particularly that my wonderful hubby is here by my side to help me in any way I need. I don’t know what I would do without him. I love him so much!!

I pray that you keep Christ as the center of your Christmas giving and celebrating, and that you and your family enjoy His Blessings during this holy time of year.

My Brain is Empty!! Well…

Day by Day with a Movement Disorder Posted on November 22, 2010 by  

OK, that’s what my hubby has to say about it. We had good news today. My blood work was all OK and my MRI was clear, so that seems to leave side effects of my meds as the reason for my terrible memory. As for the jerking, I had one good day, and then it was back like it had been. So my Neuro told me today to double the dose of Neurontin he recently put me on, in addition to the doubled doses of Primidone I was already on. I’m hoping that lets me enjoy our family time for Thanksgiving without jerking or being a zombie. Neither one sounds very pleasant.

So, we have plenty to be thankful for with this good medical report. May God’s blessings be showered on you as well!