Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the month “September, 2012”

Additional symptoms related to CPM:

 

I’ve previously described movement issues like dystonia, Parkinson like tremors, other tremors, and random jerking movements, but this is something I have not heard about previously, choreic.

I had no idea what the word meant or what it is related to before a few days ago, so please feel free to add any input you might have about it.

 

The dictionary definition is: “An involuntary spasmodic twitching or jerking in muscle groups not associated with the production of definite purposeful movements.”

The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.
Basically, these movements are involuntary movements and jerks, so I guess in a way, I have discussed this issue before. I have jerks a lot.
If I get really stressed there seems to be this movement that my left leg does. It’s weird, and if I every experience it for a long period, I will upload a video of it. It really feels like I should have control of it. It seems ridiculous that I can’t, but it’s like my body has a mind of its own and this is one thing that I never had an issue with before. It really bugs me, but others don’t seem to notice. I guess some might consider it a  nervous tic.
I believe that the following videos really do what the motions are like for those who have these types of jerks.
This is kind of what I have experienced, so I’m posting it. I don’t have issues with my face so much as I do with kind of a rolling to my left and a rocking of my left leg and rolling of my body. It  really seems like I’m jittery or nervous or can’t sit still.  I don’t experience it very often and the periods that I go through are brief. I believe this is a positive sign.
With the following video, the little girl developed this because of scarlet fever, not huntington’s disease. She was able to recover almost completely so the following videos show her before and after:
Another good example. I believe these kind of show the extremes. Some people just seem fidgety. Others are extremely disabled.
The information that I have found has been sparse when it comes to directly attributing these choreic movements to CPM/EPM. However, it has been documented. It may not be an immediate appearing symptoms. In some cases it did not appear until months after CPM/EPM was first diagnosed. I have read that this in not an uncommon theme regarding EPM. It seems that movement disorders with EPM can appear months after the injury. I really noticed my issue develop at a doctor’s appointment. I was becoming extremely agitated, and I realized that my left kept moving as well as my left shoulder. I kept crossing and uncrossing my leg as well as moving in my chair. I’ve noticed those movements at other times of stress.
Thankfully, I don’t think it is getting worse for me.
The following information is a chart that describes that chorea can be caused by electrolyte issues:
J Neurol Neurosurg Psychiatry 1998;65:436-445 doi:10.1136/jnnp.65.4.436

  • Review: Neurology and medicine

Dystonia and chorea in acquired systemic disorders

Table 6

Metabolic aetiologies of dystonia and chorea

Hyperthyroidism
Hypocalcaemia (hypoparathyroidism)
Hypoglycaemia
Hyperglycaemia
Hypernatraemia
Hyponatraemia
Hypomagnesaemia
Osmotic demyelination syndrome (central pontine myelinolysis)
Splenorenal shunt

 

Literature also seems to suggest that these reasons that these choreic movements occur is because of injury the putanem or basal ganglia. It suggests that there is a decreased amount of GABA, and there there are issues with Dopamine and glutamate.

Frankly, folks, I simply can’t read through this very detailed information from the following journal link, but it goes into great explanation why both dystonia and chorea are found in a variety of brain damage injuries, including CPM/EPM, Huntington’s disease, and many others.

Here is the quote:

As discussed earlier, dystonia and chorea most commonly result from striatal dysfunction, and hypoxia-ischaemia has been shown to alter several neurotransmitter systems in the striatum. Glutamate is the main neurotransmitter in cortical neurons projecting to the striatum and may contribute excitotoxic injury. Hypoxia-ischaemia has been shown to increase striatal extracellular glutamate, and decrease glutamate transporter concentrations. Direct lesioning of the globus pallidus with excitatory amino acids in monkeys produces cocontraction of opposing muscle groups on reaching, as in dystonia.9Extracellular dopamine concentrations rise and concentrations of dopamine metabolites fall after hypoxia-ischaemia.710Dopamine may also potentiate the excitotoxic properties of glutamate, and depleting the striatum of dopamine before hypoxia-ischaemia decreases the degree of striatal injury. In the neonatal rat model of cerebral hypoxia-ischaemia, striatal D1 and D2 dopamine receptor numbers fluctuate until 9 to 11 weeks after injury, at which time the D1 receptor number has returned to normal but the reduction in D2 receptors persists.11 Hypoxia-ischaemia also results in areas of complete loss of preproenkephalin mRNA in the dorsal striatum of the rat brain.12 Enkephalin, together with GABA, is an inhibitory neurotransmitter in the projections from the putamen to the external pallidum. Hypoxic-ischaemic necrosis of medium sized spiny striatal neurons may be responsible for decreased concentrations of the inhibitory neurotransmitter, GABA. By contrast, the striatal cholinergic system remains relatively preserved or even upregulated after hypoxia-ischaemia, as evidenced by an increase in cholinergic fibres and cell bodies, and an increase in acetylcholine release.13This is interesting in that anticholinergic medications often ameliorate dystonic movements.

http://jnnp.bmj.com/content/65/4/436.full

J Neurol Neurosurg Psychiatry 1998;65:436-445 doi:10.1136/jnnp.65.4.436

  • Review: Neurology and medicine

Dystonia and chorea in acquired systemic disorders

I will try to add more to this post in the future if I can, but right now, I can’t. Please feel free to leave questions or suggestions as you like.

 

Have a great night 🙂

 

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The Stages:

It’s been hard the past few months, and I think that shows in my “personal” posts. I’ve been told by some that I’ve been a bit negative about what I’m going through. I’ve been told by others that I’m depressed.

It is really hard to live through what I’ve lived through, and I found out that all of those things that I’ve experienced are normal.  For those of you who might now be used to going through difficult times in your life, having CPM/EPM might be a slap in the face. I’ve gone through really difficult times, and it was still a slap in the face for me. It seems that most people tend to not quite understand everything you are experiencing, so I thought this post would be dedicated to getting a better grasp on what to expect. It’s  not just what your significant other might live through, but it’s the steps or processes that you might live through too.

I think once you get on the other side of this process, then you can really start to live the rest of your life as it is now or prepare for the future. I want to stress that these steps do not have any specific order. They are NOT an exact science. You might experience one of these steps. You might experience all of these steps. You might live in a cycle of these steps. There’s no guarantee, but I hope it helps you understand what to expect and gives you a few resources on how to cope with it.

You are your own person, so don’t expect anyone to try to identify what you are living through. They can’t know what you are living through, but it’s important to understand that they are living with or around you and because they love you, seeing you in pain will give them pain of their own.

They aren’t trying to make your life miserable, so try to be patient. They are doing the best that they can to give you the support that you need, but it isn’t easy for them. You will find that they will go these same stages too because it is a trauma to their life just in a different way.

I hope that makes sense.

The stages are known as the five stages of death, but it’s actually a more accurate way to describe as the five stages of trauma. In other words, it’s classically known as the five stages of death and dying, but you will find that people live through these same stages when ever there is a major impact to their life…loss of a limb, brain injury, loss of a job, an end to a relationship, terminal illness, etc.

The five stages:

Denial.

Anger.

Bargaining.

Depression.

Acceptance.

For me, I don’t think I went through denial. I think I went into shock and fear. I didn’t understand fully what having CPM/EPM meant. I could recite the worst possible scenarios that could happen, and I felt lucky after I passed through the first 12 weeks without dying, but I was still scared because there is that unknown.

I really didn’t want to make adjustments to my routines because I really thought in time things would get better. Maybe that was denial, but my doctors gave me the hope that I would recover in a year or so, and that I would see major improvements in that time. I did experience huge improvements in the first 12 weeks, even in 6 to 9 months, but now things have leveled off, and I believe in things like memory they are getting worse. So, I don’t know if that’s denial.  I had different expectations.

I definitely experienced anger. I am still experiencing anger. I have to say there are days that I will get in the shower and cry. Yes, I know it’s strange to cry in the shower, but it is one of the few times where I can be alone..no kids, no puppy, no phone calls, and I have time to focus on what I am going through. And what I am going through sucks. It sucks. So, this morning, I was thinking about how this stupid doctor screwed up my treatment for something that EVERY doctor is supposed to know how to treat, and now I am going through SO much stress and anxiety. All I wanted to do was be a doctor, and there was no guarantee that it would happen, but I had made it so far through so much, and so I become extremely ANGRY. Yes, I am. I am hurt and because I am so hurt, I am angry. That doctor will go to sleep tonight and he may only think about what he is going to do this weekend. Is he going to fall asleep tonight and think about how I lost my life? No, probably not.

It’s stressful living this life. It’s hard right now, and I have no idea what I am going to do with my future or how much of a future I have. And so Anger is something that I am learning to live with but that anger comes from the pain and hurt over what has happened to me. I just want to go back to being normal and I can’t.

Bargaining, well I’ve begun to do that. I was in Chicago a few weeks ago, and I found an Irish vendor. It was basically Irish and Catholic trinkets of all kind. I went through the medals of all the saints, and I found the medal of St. Jude. St. Jude is the saint of lost causes, especially when dealing with health issues. So, I had to get the medal. I had to wear it daily. It didn’t take long for me to lose it. I have no idea what I did with it. But, it’s really sad because even though I haven’t stepped inside a church (except for a recent baptism and wedding) in YEARS, I had to buy this medal of St. Jude and wear it and pray with all my heart: Please let me get better. Please let my legal issues work out. Please let me get better. I will help the poor, post an article in the newspaper. Whatever, I can do to fix this I will do it.

I had no idea that this was all “normal” for what I was going through. I mean I think I went through something similar while I was in the hospital. It was a: please don’t let me die, kind of prayer.  It was a scary time, but the only thing I did was pray a bit. It wasn’t the same as when I bought and wore a St. Jude medal recently. It wasn’t until that point that I really started the bargaining: if you make me better, I will……

Heck, if you ask anyone, including me, you’ll understand that I’ve been dealing with depression. I think it goes hand in hand with the anger, hurt, and frustration. It’s a slap in the face when you’re told to just be patient that things can get better, but then you hit a stagnant point. This just haven’t moved, and I don’t have any patience. I really don’t.

It is depressing facing the fact that you are not like other people. Your life has changed, and it’s not for the better. You are facing so many bad circumstances and you have no control over it. How are you going to be able to live the rest of you life like this? Are you going to be able to watch your children get older? You might be facing unemployment or financial uncertainty or be dependent upon friends and family to just do the basic things in your life.

This is depressing.

Eventually, you will move to acceptance. This is one of the more peaceful stages of your trauma. You start to realize that your life has changed and that there isn’t much that you can do to control the situation. It isn’t right. It isn’t fair, but you can not move beyond the other steps until you reach this one. And it can’t just be a process of saying that you are hurt or listing the horrible way the injury has impacted your life. You have to get to a point where you actually feel and accept the injury.

Literally for the past year, I have been very vocal about my experience and how it has changed my life, but that didn’t mean that I accepted what was going on with me personally. I was in denial about how permanent these changes are. I still hold out hope that things will get better, but I’ve come to accept that I will NEVER be the same person. I have been changed, physically, mentally, emotionally by my experiences. I have come to accept that I will have to write things down to make sure I can track how much I’ve spent. I will have to label places around my house and make a conscious effort to keep placing things where they belong. I will have to trust my son when he tells me that he didn’t take money from my purse or the cashier when she tells me that I received the correct change.

IT IS EXTREMELY HARD FOR ME TO DO THIS. EXTREMELY. I’m an unbelievably independent person. I’ve always had an unbelievable memory that I took for granted. I’ve never had to label things, etc. But now I am accepting that those changes have to be made, and I will have to commit myself to doing them.

It’s hard. It’s not fair. It sucks. I shouldn’t have to do it. I’m still very angry about it. It’s depressing, but I am going to have to accept it, learn to live with it and adjust or I will never be able to move past it, and I’m ready to move past it.

I really hope you find support in this post. I would have never realized that these steps are a process, and keep in mind that with any major change in your life just because you go through the cycle of these steps once doesn’t mean that you won’t go through them again.

Take care 🙂

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