CPM/EPM | Hyponatremia and Central Pontine Myelinolysis

Archive for the tag “CPM/EPM”

13 Apr 2012

What was I thinking:

Ok, I hope you can relate to what I’m going to post tonight, but maybe you won’t. Here’s the thing, I really don’t know what’s “normal” or what’s not normal in regards to my experiences after brain injury.

I had another appointment with my cognitive therapist this week, and God bless her (Angela C.) I’m not sure how she does what she does because if her patients are anything like me, then there’s a whole lot of craziness that comes through her door each day 🙂

I really have to give her kudos because I don’t know what her “role” is in my actual therapy. She’s obviously there to help me rebuild or learn to navigate through the changes that have happened after my injury, but I swear I threw a curve ball by asking her about the emotional craziness I’ve been dealing with over the past 10 months. I have to say she not only handled my emotional unraveling with professional grace, but she provided me with excellent advice.

As I mentioned before, she is above and beyond what I could ever ask for, so much so that I both forward and slightly dread meeting with her.

Now, doesn’t that seem a bit contradictory? Nope not really..let me explain.

I love going to my sessions because I know I’m going to get somewhere, make a step forward that I need, but I also end up tearing up about 5 times during our 45 minute to hour long session, and if there’s anything I hate to do, it’s to lose control of my emotions in front of other people.

My last session with Angela was no different, and to make matters slightly worse, I confided in her regarding my somewhat lack of ability to control my impulses.

I developed the brain injury in June, and one of the first issues I experienced with impulse control was in September.

I very suddenly decided to go to Jeffrey’s funeral. (Jeffrey had CPM, and was a very big source of support for those of us who have CPM/EPM.) He died very unexpectedly from an issue related to CPM.

I wanted to go to his funeral, but it was a very long drive and I was not supposed to drive alone because of the neurological issues that I had. It was extremely dangerous, and I was going to be alone. It was overall not a great idea!

But, I decided to go and I went. Well, about an hour into my drive, I thought, it was going very well, and wouldn’t it be great to travel across the country.

So, I called Tom, and told him I wasn’t going to go just to the funeral, and that I didn’t know when I was going to be home. I wanted to visit family and friends and see things that I’ve always wanted to see, like the Grand Canyon.

I didn’t even have more than 2 days worth of clothes with me. I was only going to the funeral and then straight back home the next day.

There are so many absolutely crazy things with that decision, but to name a few; lack of money, traveling alone, not having clothes or toiletries, not knowing where I was going or where I was going to stay….really folks the list quite extensive on why this was an absolutely crazy thing to do. But at the time, it didn’t seem crazy at all.

Fast forward several months, and I was on the way to return something to a store with my son. There was a pet store that was on the way. We stopped inside. I had NO intention of buying a pet, but after an hour, we were walking out with a puppy and about $200 in puppy supplies.

Now, anyone in my family could tell you, this was nuts. I would never spend money like that on a pure breed dog, let alone GET a dog.

The list really does go on and on with decisions that I am constantly making every day that is beyond my old scope of reason, as well as my ongoing dwelling on decisions. It takes me at least 3 times as long to try to make a simple decision.

SO, I was sitting in front of Angela explaining all of my crazy impulse issues, along with my recent sudden decision to end my relationship with Tom, and wanting to know if I was losing it…was this normal? Were these issues being caused by the brain injury or am I losing my mind in other ways?

Now that has to be a hard question to answer.

Of course, I’m distraught. Over the past 10 months, I’ve felt like I don’t know who I am any more. I’m not sure what’s wrong with me. I don’t know if what I’m experiencing is “normal”, or if I’m losing my mind.

Has the brain injury changed me? Or am I changed because of the brain injury?

To me, it’s hard to distinguish between the two, so let me try to explain a little bit more about what exactly what I mean by that.

Having the brain injury change me, who I am and what I think, is something I can’t control. It’s something that I have to learn to manage and live with.

If I have changed because of the brain injury, then I am now making alternate, conscious decisions to do things differently because of some realization that my life is finite or live every day to the fullest type of mentality. I am in control. I am just choosing to do things differently because of the experience that I lived through.

I have always been a very responsible person. I’ve always made decisions that are in the best of interest in my family or myself, but I am not doing that now. I’m struggling to control my actions or failing completely at controlling them, and this is all extremely stressful to me.

What’s happening?!

This is what I was asking Angela, and it’s a difficult for any person to answer let alone a person who has only seen you 4 times, but she handled the question with great tact, and she gave solid advice…which is why I give her major kudos. If someone approached me with a similar question, I don’t know if I would have been able to give them a great answer.

She does think there is a physical response to the brain injury and issues with dopamine receptors in the brain…and this makes sense because I have other issues with tremors, shakes, jerks, spasms that are also from the brain injury that are also linked to dopamine receptors in the brain.

However, she also said that there is probably a psychological “root” to my current impulse issue which she explained with such extreme accuracy that it makes me think she is psychic. Either she has access to a medical history that I didn’t think was available to anyone, or she is totally psychic because she so accurately described my history that I wondered if she was related to me in some secret way.

I really don’t know how she did it.

That said, she advised me to not make any impulsive decisions for awhile. She told me that I was going to have to tell my inner child, “NO”.

I really think that’s going to be easier said than done.

Now, I’m going to go a little bit more in depth to why I’m feeling especially crazy since the brain injury, and this is something that I didn’t discuss with Angela, but I really think it’s important to bring up before I forget it again.

In the past few months, I’ve had this emotional disconnect from things, and it’s something that I really can’t explain.

It’s this growing ability to get angry quickly as well as feel completely void of feeling at times when I should feel something.

When I was being treated for EPM in the hospital, I felt his overwhelming sense of compassion, understanding and love for everyone, but now, I feel this lack of feeling for things, but I also tend to experience periods of inappropriate tearing.

I don’t really “cry” a lot, but my eyes will well with “tears”. This happens a lot when I discuss personal issues with my boss, which is a time that I really don’t want to be on verge of crying.

Seriously, I have such a lack of control of this at this point. It seems I have no middle ground. Either, I feel nothing, feel completely angry or am on the verge of crying.

It’s such an extreme range of emotions, but the one emotion that I haven’t really felt since having this injury (outside of the hospital) is a sense of love or happiness.

Now, right now, I’m blaming this issue on Tom. I’ve convinced myself that I’m not happy because of the stress in my relationship with him, but I have to pause to wonder if what I’ve always said is true: the only person who can make you happy is you.

If that’s the truth, then why I am not I happy? Why are the only major emotions I feel right now anger or frustration? Why am I so irritable over every little thing? Why am I going pretty much from one extreme to the other? Is this being caused by the brain injury? And if so, how will I get past it?

I do believe the brain injury has something to do with it. I’ve read a lot about how people with EPM/CPM tend to experience a shift in their personalities, but I really don’t remember everything I’ve read about it, and I am finding less and less time to research 😦

That said, I am hoping to look into this further, but I also HATE to make excuses for my behavior. I really believe ultimately that people have control of their decisions, etc and how the act.

I would LOVE your feedback regarding this post because truly this is one of the things that really eats at me. Are you experiencing anything that is similar? Have you noticed changes in yourself or your loved one with CPM/EPM? Are all of the things I discussed tonight just happening to me?

Let me know!

Posted in I just have to say this: and tagged brain injury, cognitive therapy, CPM/EPM

23 Feb 2012

02/23/2012

So today has been pretty uneventful. I thought I was going to take a friend out for her birthday, but that will have to wait.

Last night, I didn’t make any posts. It was just one of those days. I was tired. My sinuses felt they were going to explode, so my head hurt so badly, but I managed to make it to work.

Prior to my injury, I was able to put in a 80 hour week. I was a bit nuts by the end of a 16 hour shift, but I could do it. I was able to come home, crash, and get up and do it again 8 hours later.

I was doing that WHILE I was fighting APS, endometriosis, and the un-diagnosed Cushing’s Disease.

In other words, I’m not a slacker. I work hard. I always try.

Last night, I drove home after a four hour shift, and I wondered how am I going to be able to do this? My head felt like it was going to explode. My hands were so stiff and sore. It’s hard to move my fingers, and I didn’t spend any time typing except for the time at work. I’m facing huge challenges getting through four hours of work.

How will I survive as a doctor if it’s killing me to put in a four hour shift?

Even now, my fingers ache. My wrists hurt. The stiffness is difficult to deal with, and I have to wonder what’s going to happen next? Is this going to get better?

My medical back ground says: nothing gets better with age.

My hope says: there’s 60 year old’s running marathons. This is only temporary.

I guess that’s what we are left when we start to lose our health, fear of the unknown.

A dear friend of mine reminded me when I was first injured, focus on the positive; your mind is important in the healing process.

I know he’s right. There are so many inspirational stories of people that have faced great adversity and adapted and over came their challenges.

I always find it amazing as to how many people actually do this. The following is a popular true story of a girl who, despite amazing challenges, overcame 🙂

http://www.youtube.com/watch?v=ePFKksD0XkQ&feature=related

I’m not a famous surfer, and I can’t even say I’m a famous anything..but I can relate to her message in her video.

I was put on a path to be a doctor, and after having this injury, I’ve spent a lot of time questioning if and how that will happen. I wonder if I’m going to be able to meet this goal. I wonder what my purpose is in life if it is not medicine.

I think these are the questions that a lot of people face daily in their struggles with money, health, employment, being a parent.

Those aren’t easy questions to answer, but I think if we continue to follow the path, despite obstacles that we face, we will persevere or will be directed to a new path that was meant for us.

Wouldn’t it be great if we had a crystal ball and could know with absolution what was going to happen next? Maybe it would take some of the fear and anxiety out of the surprises that we face, but I also think that it would take away the mystery.

If you are facing something that you believe you simply can’t overcome, then I encourage you to seek advice. I really recommend reaching others through online support groups. You will find so many magnificent people who are going through if not the same thing you are, something similar.

If you are struggling with a new, unforeseen obstacle, like CPM or EPM keep your head up. Your life isn’t over. You just have a new challenge to defeat 😉 and you don’t have to do it on your own.

Posted in I just have to say this: and tagged Bethany Hamilton, CPM/EPM

22 Feb 2012

Dystonia (cramping):

I’m struggling with what to approach or how to approach it.

I’ve covered in some detail how CPM/EPM is caused and what parts of the brain are effected. I could discuss in more detail what areas of the brain are known to be associated with certain symptoms. However, there is a lot of mystery still surrounding how damage to the brain will cause a specific symptom.

I could discuss in more detail how the damage occurs (pathogenesis).

I could discuss who are some doctors to reach out to (right now this list is rather short). I could discuss prognosis or go into more detail on symptoms.

There’s also the social support. For instance, if you are like me, you might not have returned to work full time or may be facing ongoing disability.

How do you get started with SSI or social security disability?

There’s the legal ramifications.

One of the problems I’ve had with this injury is making decisions, so my attention becomes fragmented.

I guess there’s no wrong way to scramble an egg, so I’ll just choose something.

Dystonia.

I don’t think I’ve gone into great detail regarding this issue, and if you’re reading this you’re in for a treat. 🙂

Dystonia is painful involuntary muscle contractions caused by a neurological (brain/spinal cord) issues.

There’s two types of classifications for dystonia: focal and generalized.

Focal dystonia generally effects a smaller, single area. For instance, you may have focal dystonia of your hand. Most of the time it is in one hand at a time. So, it’s not like both of your hands will cramp at the exact same time. It generally effects smaller muscles, like those of your face or neck.

Now, something, I did not know is that something like writer’s cramp is considered a focal dystonia.

(That said, guess what I’ve developed since having EPM. I’m getting it in my hands and feet.I know, really another symptom, but yes. It hurts when I type or write, especially for extended periods. Of course, I used to have this before I had EPM too (who hasn’t experienced writer’s cramp at some point in their life), but I never had it daily like since I’ve had EPM.)

I think the following video shows how minor these focal dystonic neurological issues might seem. In a lot of videos that you see online, dystonia seems to be extreme cramping, but that’s only in severe cases. It is in most cases, especially early on without treatment not as noticeable except for to those who are living with it. Please don’t take that to mean that this issue is not painful or abnormal.

http://www.youtube.com/watch?v=T7OpC9-Gd9g

Like everything, stress and fatigue tend to make these movement based issues worse.

I think what’s unusual with dystonia that’s caused by EPM, it tends to effect more than one area, not at a single time, but you can experience radiating cramping through out your body. So from the first week that I developed this, I would experience a pain in my hand, 30 seconds later I would have it in my foot, 30 seconds later it would be in my thumb, then my back. It was just constant circulating pain. It’s now become the cramping and stiffness as described in the video above.

In most neurological cases of dystonia, you will have a primary problem and over time you will develop the cramping in other parts of your body.

I believe dystonia also causes the swallowing issues that are associated with EPM/CPM.

Possible causes for Dystonia:

Sometimes dystonia is but one symptom of a more pervasive disorder that affects the basal ganglia, such as:

Parkinson’s disease

Huntington’s disease

Traumatic brain injury (ie, CPM/EPM)

Stroke

Brain tumor

Oxygen deprivation

Infections, such as tuberculosis or encephalitis

Reactions to certain drugs

Heavy metal or carbon monoxide poisoning

The above information comes from: http://www.mayoclinic.com/health/dystonia/DS00684/DSECTION=causes

Now, generalized dystonia impacts Larger muscle groups in the body, such as those of your back and abdominal wall.

Check out this video for a woman who is living with generalized dystonia:

http://www.youtube.com/watch?v=neCpWlDQhGQ&feature=related

Again, please note, that not all cases of dystonia are that extreme, and they may not be permanent distortions but like with seizures, you can have cycles to it. It does become worse with activity and movement of an afflicted part of the body.

I do recommend the Mayoclinic website that I cited above to get additional information on dystonia.

I hope this gives you an understanding as to something you might experience with CPM/EPM. Hopefully, it brings you peace. If you are experiencing what I’m experiencing with the medical profession, you might feel a little less crazy by reading this. 😉

God Bless!

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged brain injury, CPM/EPM, dystonia, focal dystonia, generalized dystonia, parkinson's disease

19 Feb 2012

1 Comment

Tremors:

As I mentioned on my previous “personal” post, there’s a lot of information on tremors, and as I recently found out, it’s important to know the distinctions when you are dealing with CPM/EPM.

The real question is: what are some of the characteristics of a tremor associated with CPM/EPM?

This really isn’t an easy question to answer because it seems that movement issues associated with CPM/EPM vary. Not everyone with CPM/EPM will have an associated tremor, just like not everyone will develop locked in syndrome.

Further, there seems to be the initial injury that occurs with CPM/EPM, but as the brain creates new neuro pathways after the damage, then there can be new movement disorders that develop.

For whatever reason, this late onset of symptoms seems to be more likely to develop in a person who has damage in the basal ganglia. When a demyelination occurs outside of the pontine area of the brain, it is known as EPM. So, there seems to be a connection with areas damaged outside the pons and movement disorders.

In three survivors of central pontine myelinolysis, dystonia (in two patients) and rest tremor (in one) were sequelae. The onset of these movements occurred 3 weeks to 5 months after the initial presentation with central pontine myelinolysis. Magnetic resonance imaging revealed basal ganglia lesions suggestive of extrapontine myelinolysis in all three patients. We propose that the movement disorders seen in our cases are clinical correlates of extrapontine myelinolysis.

http://onlinelibrary.wiley.com/doi/10.1002/mds.870070208/abstract

We report on a woman with delayed-onset of belly dancer’s syndrome 5 months after central pontine and extrapontine myelinolysis (CPM/EPM) and severe hyponatriemia. This case demonstrates that basal ganglia lesions in EPM can be the underlying pathoanatomic substrate for the rarely observed belly dancer’s syndrome. The sequential appearance of extrapyramidal symptoms might reflect an ongoing but ineffective or deficient remyelination process. The presence of CPM/EPM should be considered in patients with involuntary dyskinesias of the abdominal wall.

http://onlinelibrary.wiley.com/doi/10.1002/mds.21394/abstract

In order to understand tremors to the fullest it is important to understand why people have tremors and the different types of tremors.

For instance, Parkinson’s Disease can cause a resting tremor. It usually impacts one side of the body early on in the disease and then as the disease progresses the movement issues become apparent in both sides. This type of movement issue can actually start in just one finger and for only brief periods.

There are also people with Parkinson’s who first notice the tremor in their hands when they are holding something, like a paper to read, as time progresses these tremors can become significant at rest as well as with activity.

As the following doctor states, it is really difficult to diagnose tremors because they can vary. I found the following video really detailed on how to diagnose a tremor, and I believe that University Hospital that made this video has the right approach in trying to diagnose it. I wish this is how my appointment with the neurologist went. I tried to explain that doctor that the severity of my symptoms vary, and he seemed completely dismissive. Anyway, check out this video:

http://www.youtube.com/watch?v=pP8jaxommQY

I have not been able to find a video that shows a Parkinson’s like tremor early in the disease.

The following video shows the various types of tremors. However, the video is very short.

The next video that I am posting also describes a postural tremor typically found in multiple sclerosis. It also describes cerebral tremors.

Now, I want to pause to explain that parkinson’s is a disease that describes how a brain cell has difficulty uptaking dopamine in the brain. In regards to MS, there is damage to the myelin sheeth because of an autoimmune reaction. There are other reasons for tremor as well, such as cerebral tremor. This type of tremor occurs at the end of an intentional movement. You try to touch your nose or press a button, but you can’t because your hand shakes. This tremor is caused by an injury to your cerebrum. There is a dystonic tremor. This tremor is caused when your muscles contract severely and cause your arms or legs to shake.

In regards to CPM/EPM, they are not certain why some people have tremors. There have been studies that show some people have issues with their cells uptaking dopamine like in parkinsons; however other studies showed patients with tremors had normal dopamine uptake. In these cases, the researchers speculated that the tremors were caused by new neuro pathways that develop.

I hope that one day, we will have more research that is done for CPM/EPM. In the mean time, it’s important to rule out all causes for your neurological symptoms, and in order to receive the correct treatment it is important to meet with qualified neurologists.

Please feel free to contact me with any questions or any information regarding your neurological issues. It is important to get input from you so that we can know and understand more about this injury.

UPDATED 04/14/2012–I’m including the following link that describes that there are people who experience resting bilateral tremors of both hands, that aren’t a Parkinson’s tremor. http://www.ghpjournal.com/article/S0163-8343(99)00018-3/abstract

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged basal ganglia, cerebral tremor, CPM/EPM, dopamine, essential tremor, MS, Multiple sclerosis, parkinson's disease, Parkinson's tremor, tremor

18 Feb 2012

02/17/2012

This week I had yet another appointment, and this appointment has stuck with me the rest of this week.

First, I want to apologize for not posting more recently than this. If you have CPM/EPM, you will find that your life seems to be full of the unexpected. You will find that there are days that seem normal and days that you wonder how will you be able to live the rest of your life in this manner.

It’s exhausting. It’s frustrating. It’s unfair.

It seems like everyday is chaotic and for someone who used to be so focused and moderately organized, this is driving me freaking crazy!!!

IT’S STRESSFUL!

SO, now I’m starting yet another category for my blog, but I still have to go back and add to hyponatremia, to CPM/EPM, and to my story!!! However, what I experienced this week needs to be addressed before I forget it, and it has really consumed me, so I feel I have to write about it.

C’est la vie!

This week I traveled 4 hours to meet with a neurologist who is a movement disorder specialist. I also had a MRI and something else….what was it. For real!! Another five minutes gone to trying to figure out what it was that I actually did while I was there. I only had three appointments. Oh, yes, the skin biopsy.

I thought I was going to go to the neurologist to get a TREATMENT for my tremors, jerks, shakes, twitches, spasms, etc. In other words, my neurological problems with movement.

I guess this is where I made my mistake. I had already met with a neurologist who is treating me for EPM, and she was sending me to get treatment for my EPM movement issues. She told me that she was sending me to a movement specialist neurologist for this purpose. I assumed that this was going to be the reason for the appointment: I was going to get medicine for my neurological issues related to EPM.

If I thought that I was going to be examined to determine on whether or not my movement issues were related to EPM, I would have been more prepared. I would have brought materials on EPM.

Here’s the thing: EPM IS RARE. CPM IS RARE. MOST DOCTORS HAVE NEVER TREATED A PATIENT WITH THIS INJURY, and it’s not that they are stupid or trying to be judgmental, they are purely ignorant!

This doctor was the same way.

I had no idea what the true intention for this appointment was, and this set me up for disaster.

This doctor did a complete neurological exam. He was pretty thorough.

After the examination, he told me: Well, you have an essential tremor and it is not related to your EPM. It’s fairly mild, but I can give you medication to treat it. I would also like you to test for Wilson’s disease. You don’t have any of the symptoms for Wilson’s, but it is a cause for tremors in a person who is younger. I don’t think you have it, but we’ll do the test as a precaution.

Before, having EPM, I would have just nodded my head and left. I would have spent the rest of the day biting my lip and waiting to say the things I wanted to say.

I don’t know what would have been better. I really don’t.

I literally started arguing with the doctor. He told me that because my MRI images were normal that the tremors weren’t caused by EPM.

Ok, folks, you know I’ve done research. I’ve spent the past 8 MONTHS researching this injury, and my first question to the doctor was: how many patients have you treated with this? His answer: ONE!!!

I then went on to say: My MRI still shows the injury (and it does). This is what my other neurologist has told me. However, if you were more familiar with EPM/CPM, you would understand that there is no correlation to the findings on an MRI and a person’s symptoms.

The doctor didn’t cotton to my pointing this out to him.

We literally started to ARGUE.

He basically told me that he wasn’t going to have me lecture him on this, but then I explained to him that I wasn’t pulling this information from WebMD. My information comes from credible medical research documents, and that I was preparing to go to medical school.

He warmed up a little bit at that point.

He tried to explain to me that the ONE patient that he’s treated with this disorder had the Parkinson’s like tremor that is associated with EPM/CPM. He told me that he had a video that he took on that patient. This particular person had both significant injury to the pontine region as well as the extra pontine regions AND that this person’s MRI still showed the injury.

He believed that my movement issues have nothing to do with EPM. He thought they were random.

He told me that I did not have Parkinson’s, and I did not have a Parkinson’s tremor.

Okay, so what’s wrong with what he was telling me, and how could I have better handled it? How could have this appointment gone better? What should I have done?

First, I should have been prepared. Really. I’ve been to hundreds of appointments. When you have something rare or not clearly understood, you need to come ready for everything. You need to have any research that you’ve found regarding your disorder. Make copies of your labs, of your reports, of research that you have found.

I had no idea what a Parkinson’s tremor was and how it was different from the tremors that I have. I will make a separate post on tremors and how they differ. Of course, with everything that is medical, there is disagreements on what is and isn’t a Parkinson’s tremor.

Basically, if you have a tremor or movements that impact one side of the body (at least in the beginning stages) that are present when you ARE NOT moving, they suspect Parkinson’s.

The tremor that the movement neurologist suspected is something called essential tremor. This type of tremor is usually found in both sides of the body. It generally becomes worse when you are moving. For instance, if you are trying to get food to your mouth or trying to get a cup to your mouth, but your hands shake so severely that your food falls off your fork or you spill liquids from your cup, they suspect essential tremors.

Now, I had no CLUE what the difference was. I had no idea that there was a difference. All I knew was that this issue became extreme when I developed EPM.

If I was prepared for this appointment, then I would have been able to produce information regarding my tremors. I would have also been able to represent the different types of tremors that are associated with EPM.

I did not know until after the appointment that this doctor really did not know what he was talking about: EPM/ CPM can have both, either, or neither…Parkinson-like or bilateral tremors.

In other words, my “essential” tremors, are probably caused by the EPM.

Furthermore, the doctor told me that there were no reasons to think that these tremors would not be long lasting if they were indeed caused by EPM. He believed that because the MRI images were improving then my symptoms would also improve.

I can not say whether or not this is true. I would have to point out to anyone who states that because your MRI images get better does NOT mean that your symptoms will improve. Further, if your MRI images DO NOT improve, that does NOT mean that you will not improve. The MRI, at this time, WILL NOT show anything more than that you had this injury.

The doctor also tried to state that symptoms will NOT get worse after the injury has happened. THIS IS TOTALLY NOT TRUE. DOCTORS DO NOT KNOW WHAT WILL HAPPEN WITH CPM/EPM!!! They do NOT KNOW. People do see a progression in their symptoms even AFTER 8 and 9 months.

There has not been enough research in this area to know with any certainty what will happen. I know of 4 individuals with CPM/EPM that had improvements, but after a period of 1 to 2 years, their symptoms worsened. I really believe that this is related to just normal aging.

I would compare it to my cell phone that I dropped in the toilet. (It was an unused toilet at the time). I made the mistake of turning it on as soon as I fished it out. Now, anyone who is familiar with electronics knows this was a mistake. It basically fried it. However, I did not want to go out and buy a new phone. So, I took it apart. I sprayed it down with electronic cleaner. I let completely dry out and put it back together. IT WORKED! 🙂 BUT, there were certain keys that did not work, the pound and star button. I was perfectly fine with that because I didn’t really use those buttons that much any way.

So, I was happy, but several months later, other keys started not working properly. Some numbers would repeat a dozen times when I pushed them once. Sometimes, letters wouldn’t show up.

And this is my point, truly the brain works in a fairly similar way. We don’t understand how it works completely. Medicine is really archaic in this field. However, we know as we age the body breaks down. They don’t work as well. This is true for the brain. So, if you already have an injury in the brain, yes, you are likely to see improvements, but it’s like my cell phone, you just don’t know how long those improvements will last, and you are most likely to see these areas degrade over time as your brain ages.

Getting back to my appointment:

I tried to explain that the delay in new symptoms is believed to be caused NOT BY CPM/EPM INJURY directly, BUT BECAUSE YOUR BRAIN TRIES TO REBUILD CONNECTIONS, and it is believed that these new pathways can cause the new symptoms.

Therefore, people have seen NEW symptoms months and EVEN years after the injury. The doctor I saw agree with this, but he felt that new symptoms would not be seen after 1 or 2 months after injury.

See this article for a description on how this isn’t true:

Journal of Clinical Neuroscience 19 (2012) 179–180

And this one:

Journal of Neurology (1995) 242:450-454
© Springer-Verlag 1995

Regarding the types of tremors that are experienced in CPM/EPM injuries, most are considered Parkinson’s like, resting tremors; however there are also studies that show that both types of tremors can be present, parkinson’s and tremors that worsen with movements.

Here is information from Wikipedia http://en.wikipedia.org/wiki/Central_pontine_myelinolysis:

Permanent disabilities range from minor tremors and ataxia to signs of severe brain damage, such as spastic quadriparesis andlocked-in syndrome.^[14]

Okay, the following is what I have. I do have a bilateral resting tremor that gets worse with movement:

A 56-year-old man developed drooling and bilateral hand tremors 3 weeks after correction of hyponatremia from 103 to 125 mmol/L over 14 h. He had a prominent 6 Hz resting tremor which worsened with action and mild cogwheel rigidity. Magnetic resonance imaging (MRI) showed changes consistent with central pontine myelinolysis and increased signal on T1-weighted images in the putamen bilaterally. His tremor responded well to L-dopa therapy.

(http://www.ncbi.nlm.nih.gov/pubmed/10833626)

I could go on all day quoting journals regarding tremors and EPM/CPM. Here’s another:

Rigidity was present in all four limbs, with orofacial dystonia and dystonic posture of hands and feet and with tremor in both hands.

http://dmc.academia.edu/MahmudurSiddiqui/Papers/893372/Selective_Extrapontine_Myelinolysis_in_Osmotic_Demyelination_Syndrome_in_a_Case_of_Previously_Undiagnosed_Sheehans_Syndrome_with_Recurrent_Hyponatraemia_-_A_Rare_Association

If I had been better prepared, I would have been able to bring these things to his attention.

More importantly, I showed him two videos of my tremors. He believed these videos demonstrated that I indeed have essential tremors. And I cannot disagree with this statement. I don’t know. I’m not an expert in tremors.

That said, I only recently started recording my tremors, and more importantly, I have spasms and jerks in certain fingers, in my legs, or feet, but these jerks are fleeting. So, I will have three or four twitches in my finger and there’s no way that I can record those particular movements without making a video diary of my every waking moment. I never know when these movements will occur.

This is extremely frustrating because by this point in my appointment, there was no trying to communicate with the doctor. I was too emotionally involved and so was he.

His take away message was: you’re going to be fine. You aren’t going to get worse. You are going to get better. You should try this medication to help with the essential tremor that you have, and I am almost positive that your tremors are not related to EPM. Even if they are, the medicine should help them. You do not have Parkinson’s.

Now, this seemed to be a crux in the conversation that I haven’t hit upon previously. He kept stressing that I did not have Parkinson’s. He stated that he was an expert for Parkinson’s.

I really did not understand why he kept bringing up Parkinson’s disease. I DO NOT HAVE PARKINSON’s. I did not think that I had Parkinson’s. I believe that I have Parkinsonism. Now, I’ve previously discussed Parkinsonism. From the knowledge that I have, it is any tremor that a person has, along with dystonia, and dyskinesia, and possible issues with your voice. I am not an expert on this. I know what I’ve read, and I promise to research this further and try to post on this more when I post specifically on tremors.

What’s wrong with his message:

HE HAS ONE FREAKING PATIENT WHO HAS HAD CPM/EPM. He certainly hasn’t spent the past 8 months researching every possible thing you can find on it.

He made incorrect comparison’s: Parkinson’s and EPM. People with EPM/CPM DO NOT HAVE PARKINSON’s. They have a Parkinson’s like tremor, and that isn’t even true for everyone with EPM/CPM. He did not understand that there IS NO SET STANDARD for CPM/EPM. It’s like saying someone who has colon cancer will have the same symptoms and issues as someone with esophageal cancer. It’s like saying there is only one cause for heart disease.

He was unwilling to say: I DON’T KNOW. I will need to evaluate you further. Please spend time making more videos of your issues and feel free to contact me when your symptoms change or if you have a video of something different. He didn’t even ask me when I took the videos I made.

I tried to explain that my symptoms vary in severity from day to day. Truthfully, they vary from hour to hour. Right now, I barely have any tremor at all. However, an hour ago, I did. I have twitches and spasms even at night when I’m trying to go to sleep, at rest. They make it difficult to fall asleep. I don’t have this problem EVERY night, but probably three or four times a week.

So, what could I have done?

I should have made a journal of these things. I should be keeping a daily record of my symptoms, the times, places, how much caffeine have I consumed, etc. Doctors really like data. They like it when you have detailed information for them to look at.

I really haven’t documented my symptoms and when I have them. I should be keeping more videos. I feel embarrassed to pull out my cell phone or video recorder to make these videos in public places when I’m experiencing these problems. I believe that those localized spasms that I get in my fingers or feet don’t last long, so I shouldn’t bother trying to record them.

I AM MY ONLY ADVOCATE. NO ONE ELSE IS GOING TO DO IT. You really need to take this to heart if you are reading my posts.

No one else is going to go to bat for you, and if you are willing and able, you need to make as many records as you can regarding your situation. It can and will help you out. It might help your doctor more fully understand your situation. More importantly, you can post it here on my blog and help others with CPM/EPM.

I also shouldn’t have bothered correcting this doctor when I didn’t have access to the medical journals or very good videos of my symptoms. Now, this doctor has formerly based his opinion. He isn’t going to bother to do anything else with me. If I ever need to go back to him, I will have to have a huge collection of evidence proving him wrong.

Let me stress, it’s not important to prove him wrong for the sake of being right, but because I will not get help from him unless that happens. I also won’t get the correct medications for the types of neurological issues that I have.

It’s also important to realize that it’s important to realize when you’ve lost a battle. It’s your choice on whether or not you are going to waste your precious time and health on trying to bring this person up to speed on CPM/EPM.

As more and more records become easier to access, hospitals will become able to share information on your medical history. This means that this doctor may be able to pollute the opinions of future doctors that I see, even at different hospitals, in different cities or states.

So, you really need to make a decision on whether or not you are going to spend your time and resources on “educating” a doctor on your condition.

If you choose to, I think it’s really important to “educate” him on the first appointment. First impressions make the biggest impact, and this is most certainly true for your doctors.

In other words, you need to be prepared for EVERYTHING on that first appointment. You have to have research articles on the types of symptoms and issues that you have, especially when those symptoms are rare. You need to have videos and if at all possible, personal testimony from family and friends (hopefully someone can go with you for your appointment that can attest to your issues and their severity). It’s great if you have a journal of your symptoms from each day.

You need to ask your doctors questions like: how many patients have you treated or seen with CPM/EPM? And it’s important for you to make a decision on whether or not you are going to continue to see this person if the appointment does not go well. Be prepared. Don’t be afraid to ask questions.

I’m sorry if this post was a bit repetitive. I believe that when I have something that I feel especially strongly about, I tend to repeat it. I will try to edit in the future for those type of repetitions.

For now, I’m going to retire. and as always, please feel free to write me with any questions or your personal story.

Posted in I just have to say this: and tagged CPM/EPM, epm, essential tremors, Hyponatremia, neurological disorders, Parkinson's tremor, Parkinsonism

03 Feb 2012

My EPM story: the diagnosis:

Up to this point, I have talked about how I developed hyponatremia, how it was treated incorrectly, and how I tried return to the local hospital (the place that treated my hyponatremia) THREE times to get treatment for my developing issues with EPM.

The last trip to my local ER, I asked for a MRI because I was almost positive that I had developed EPM. Instead, they attempted to admit me for observation because of the reaction I had from their doctors, I decided it would be better for me to travel to meet with my ENT and endocrinologist.

After hearing about my issues, they were also determined to get me into to see a neurologist, despite it was the Thursday before the Fourth of July. Trust me, despite going to a HUGE hospital with hundreds of doctors, trying to get an appointment with one of their 50 or more neurologists was a big deal.

Tom and I had no idea what was going to happen next.

I left my local ER around 7pm. I was pumped full of narcotics and was almost dead to the world. I mean, I really did not know what was going on.

I got home, and I think it was at some point around 3 or 4 am, we started our oddessy. We had our three year old with us, and this trip was unexpected. We had no idea how long we would be gone, or what we would need.

I guess we planned for the worse because we didn’t run out of clothing, etc. Granted, I spent my time in a hospital gown.

So, our trip up to the hospital was awful. I had a splitting headache. I didn’t feel well. My daughter was acting like all three year olds. At first, she slept but around 9am, we stopped to get breakfast.

It became absolutely clear there was a problem when I tried to order breakfast for us. Tom had gone to do something, find a table, I don’t know what, so I was left at the counter alone to order.

I knew what we needed, but I was having trouble understanding what the girl was saying. I was extremely frustrated. All I had to do was give the girl the numbers and tell her what drink we needed with each. Tom’s order was easy. Izabel is a picky eater, so I had to make adjustments with her order, and I had a hard time asking if they had pancakes or cereal. I had a hard time explaining that I needed milk with her meal not coffee. The most frustrating thing was when I wanted to change the kind of cheese on my order. I didn’t want Swiss cheese that normally came on the sandwich, I wanted American cheese.

I kept telling the cashier: I don’t want cheese. I want cheese.

Of course, she looked at me like I was retarded because I was.

I tried to explain further: Not cheese. Yellow cheese.

My entire order was like that; I couldn’t express the changes I wanted to make. I had a hard time asking for coffee with Tom’s meal. I had a hard time finding out if they had cereal, and by the time it came to my order, I was left to pointing irrationally at the pictures on the wall. Number 6, no cheese, cheese. I don’t want cheese. I want cheese.

Yeah.

I KNEW what I wanted. I couldn’t say it. AND, these episodes kept skipping. It wasn’t continuous issues with communicating. Talk about feeling like you’re going completely nuts.

Shortly after we left Arby’s, I started experiencing the crippling stomach pains which I no longer was considering as an issue for porphyria but for my adrenal glands.

With all the physical and mental stress I was having, it isn’t difficult to believe that my adrenal glands were becoming stressed. Maybe it’s not my adrenals, maybe it is AIP, maybe it’s both…I really think only God truly knows, but all I did know is that sugar/glucose would stop the pains.

So, Tom and I went off track to find a CVS or other drug store to pick up a bottle of glucose tabs. This delayed our getting to the hospital, but trust me I don’t think I could survive an attack of crippling abdominal pain.

After a shot of liquid glucose and about 1000mg of glucose via tabs, the pain subsided a bit. I was feeling more nausea, but the painful cramps weren’t as bad.

I swear this trip was CRAZY. I think it took four hours longer than it normally does, and I can not explain WHY it took so long. I mean, there was the stop for breakfast. There was the stop for glucose. We did hit road construction at some point, and then there were at least three potty breaks for Izabel.

During the drive, we were also working with an awesome receptionist for the neurology department to try to get an appointment with a neurologist. All of the neurologists were booked or gone already for the 4th of July weekend.

They could only make the appointment for about a WEEK from that date.

At this point, I still had no true clue as to what having EPM or CPM meant. I really didn’t understand that I was in a life threatening situation.

I believe I had read about it, but it didn’t sink in that this was really what was going on with me.

I was relieved when I got to my first appointment with my ENT. I really thought that he must have left packing in my sinuses and that this was going to be the reason I was having such a horrible headache.

I remember sitting in the waiting room, extremely calm. My little girl was striking up a conversation with another little girl. Tom was looking up the newspaper on his laptop, and I was just waiting.

I tell you. I was still experiencing difficulties speaking. Then they did the torturous search of my nasal cavity and sinuses. They spray your throat and nose with a numbing spray, and I was getting extremely ill from the spray. It’s supposed to taste like bananas. It doesn’t. Some people don’t have any issues with it, but other people, like me, the numbness triggers your gag reflex and you because extremely ill.

Then they slowly insert this 1/4 inch diameter, flexible, rubber hose with a scope on the end up your nose.

It doesn’t seem like they should be able to get that much of the hose up your nose (ha, that rhymes), but they did, and I can’t imagine having an alien abduction be more painful or uncomfortable. Just saying.

The ENT reassured me that things looked good. He assured me that there was no packing in my sinuses. He assured me that the surgical site was looking great. However, he was concerned with my neurological issues. He was glad that I was going to see my endocrinologist. He thought I should be hospitalized, but he wanted me to see the endocrinologist first.

So, by this point, I needed a wheelchair to get around. I was truly nauseous, dizzy. I was having issues with my balance. I had the horrible headache.

My endocrinologist is the most awesome doctor in the world, with a close second for my neurosurgeon and an even closer third with my ENT. Truly, I’ve been to hundreds of doctors, or at least a hundred. I’m not sure if that’s an exaggeration. I’ve seen a lot of doctors, so please believe me when I say, these doctors are amazing.

My endocrinologist was disturbed at my neurological issues. She was concerned at how long they had been going on. I told her that I thought I had CPM. I explained why I thought I had CPM. She didn’t arch her eyebrows. She didn’t give me a smirk or a shrug.

She told me that it would be unlikely for me to have CPM because I was 34. She believed that only babies and old people developed CPM. I became concerned that she wasn’t going to do anything.

She left the room to try to get an emergency consult with a neurologist. She checked back with us in about 10 minutes to let us know that the neurology department had not gotten back with her at that point.

She came back five minutes later to tell me that there weren’t any neurology appointments available, and so she was going to admit me. She felt I needed to have a MRI, NOW, not a day from now, not a week from now, NOW.

I was checked into the hospital and in my room in about an hour.

I was seeing the neurology residents in about 15 minutes after that. I was seeing another neurologist about an hour after that.

I was given another IV, pain medications, and because my endocrinologist totally believes me, she also requested the IV glucose to help with whatever it was, adrenal crisis or porphyria. (Even though my endocrinologist ordered it, the neurology department-unbeknownst to me- did not want me to have the glucose treatment, so that wasn’t started. This caused my abdominal pains to become unrelenting.

By 11pm that night, I was being wheeled down for the MRI. Trust me, even though my endocrinologist and ENT believed that I was experiencing a major problem, this belief was not as well received by the neurology department. I got arched eyebrows. I got the smirks.

I was desperate that they find something on the MRI. I KNOW that sounds funny. I KNOW that sounds crazy, but when you’re in that much pain, when you have that significant of a problem, the last thing you want is for them NOT to find anything. Trust me, when you have that many arched eyebrows and funny looks, if they came back with there’s NOTHING on your MRI, the next place you’ll be heading to is the psych ward.

My relief became absolute. My confidence in myself became iron clad, when the neurology resident came rushing into my room.

Resident: You were right. You were right. You have myelinolysis. THEY DID THIS TO YOU. THEY ARE 100% responsible.

I think I was on the verge of tears. I can’t remember exactly what he said after that. This injury was out of his league, and he assured me that the fellow in neurology would be in to see me in a very short while. He stressed that this was a serious issue and that the fellow was actually coming in from home to see me.

I had my answer. I had my reason. I wasn’t crazy. I didn’t have a stroke. I was right. I WAS RIGHT.

I wish that I could say, that’s it. That’s all that happened, but it’s not. The story does continue. Maybe, now, you’ll see why I’ve chosen to write about this later. It’s easy to become distracted and angry about what happened.

It can consume you.

Plus, it’s a hell of a long story. I mean, these are by far the longest posts that I’ve made, and they take the longest to write. It’s really exhausting, but I really feel, you need to know. You deserve to know. You need to learn to trust what you feel and to fight for what you’re going through. You need to understand that even the most prestigious hospitals in the country are fallible. You need to ask questions and push for answers, even when you meet resistance.

I hope this helps you with your struggles or helps to push you forward when you feel like giving up. You aren’t alone.

Posted in Your Hyponatremia/CPM story: and tagged Central pontine myelinolysis, CPM/EPM, epm, Hyponatremia

23 Jan 2012

Doctors:

I was finished with all of my pre-med classes and was seated to take the MCAT in June of 2011. That was before being told that I was going to have to have surgery for Cushing’s Disease.

I was actually relieved to find out that I had Cushing’s Disease because suddenly everything made sense. The years of illness made sense.

Doctors try to find an answer that fits everything, but I kept having problems that didn’t fit the diagnosis. It started with endometriosis (and of course irritable bowel and fibromyalgia), but that didn’t make sense. Yes, I had pain with my menses, and I had heavy periods, but endometriosis didn’t really explain weight gain, fatigue, low grade fevers, hair loss, aches and pains, etc. I would also have crippling abdominal pain, nausea, vomiting, and blood in my stools.

I will try not to go into all the details, but over the years, I also developed hypertension. They found high uroporphyrins in my urine and blood, so my doctors believed I had acute intermittent porphyria.

Antiphospholipid syndrome explained the several miscarriage, and my elevations in cardiolipins, etc.

Bottom line, Cushing’s Disease explained everything (elevated uroporphyrins and autoimmune issues), so I was excited. I wouldn’t be cured from the autoimmune issues, but removing the pituitary tumor would take care of the Cushing’s disease, and I would feel better and there would be nothing stopping me from becoming a doctor.

I’m still hopeful that I will get into med school, but I’ve had another set back. After the pituitary surgery, I developed hyponatremia. The hospital corrected my sodium levels too quickly and that led to EPM. That was six months ago.

I’m better than where I was, but I’m a long way from MCAT ready. The MCAT is a thinking test. I not only can’t member what I need to remember, but I can’t think as quickly as I once did.

Because I’ve seen many sides of health care (that of the doctors as well as a patient), I feel conflicted regarding what I’ve been through. Life is not black and white.

I am extremely angry at the doctor’s who treated me, but I also feel an understanding about what’s happened.

I think people expect their doctors to be perfect. They get paid a huge amount of money to know what they are doing. Is it too much to expect that they do?

If you every look at a physician’s desk reference, it’s about 8 inches thick, in a font that’s similar to that used in a Bible, on paper that’s practically see through. It’s been said that about 5000 new diseases are discovered EVERY year.

If that’s the case then why do we feel that a single doctor will know and understand every disease and disorder that we might have?

Is it too much to expect?

That said, hyponatremia is a COMMON metabolic disorder. It is the MOST common metabolic disorder. Over 1.5 million people are treated for hyponatremia each year!

So now I feel caught in the middle. Yes, I do expect doctors to know more than the common person. They get paid to know it. At the same time, how will I feel if I’m on the other side of the clipboard, trying to figure out what this person’s tapestry of symptoms means?

Yes, life is not black or white.

Okay, now let me give you some more important information. Let me direct you to a group of doctors that are supposed to know more than most doctors in regards to CPM/EPM. Keep in mind, as I’ve stated before, there aren’t any “true” experts in the field because CPM/EPM is really rare, but these are doctors that have at least heard of it.

My neurologist, Dr. Noor Pirzada. I was referred to him by Jeffrey Amitin. I had the expectation that Dr. Pirzada had treated several patients with CPM/EPM. However, when I’ve questioned him regarding how many patients he’s treated, he won’t give me a direct answer, but will tell me that it’s very rare. I don’t know what that means exactly, but he’s understanding.

Dr. Noor Pirzada, University of Toledo Medical Center,

3120 Glendale Ave

Ruppert Health Center

Suite 1500 Door F

Toledo Ohio 43614

Phone: 419-383-3760

Fax: 419-383-3364

The following names come from GARD. They may or may not treat patients, but they have at least heard of it.

Dr. Richard Sterns: University of Rochester School of Medicine, Rochester, NY. (He is an expert in the treatment of hyponatremia and knows a lot about CPM/EPM.
Dr. Amyn Rojiani: University of South Florida, Tampa, FL.
Dr. Yeong-Hau Lien: University of Arizona, Tucson, AX

Yeah, I know, that list is really disappointing. If you’ve been treated by an “expert” in CPM/EPM, post it in the comments section.

I will also update it with doctors that I am in the process of contacting. Right now, I have contacted a handful of doctors that have written research papers on CPM/EPM, but I haven’t gotten a lot of information from them as of yet.

Thank you for putting up with my rant on doctors, and I hope this information helps a little bit.

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged Central pontine myelinolysis, CPM/EPM, GARD, Hyponatremia

18 Jan 2012

Getting a diagnosis:

Please bear with me tonight, I had my wisdom teeth removed today, so I’m taking pain killers. Let’s just say, I’m a bit off my game.

Most people who are treated for hyponatremia are already in the hospital for a secondary issue, like burns or liver transplants, etc. I believe persons who are being treated for other conditions are at a higher risk for a delay in diagnosis for hyponatremia. This would make it most likely for them to develop chronic hyponatremia (chronic, meaning longer than 48 hours, up to a few weeks). This will put them at higher risk for developing CPM/EPM.

That said, it is harder to diagnose these individuals with CPM/EPM because they are already ill. Most will be experiencing issues with nausea, headaches, vomiting, etc. They may even already be in a coma, so the symptoms will be attributed to other issues.

If you’re already in the hospital with a major disease, injury, or disorder and then develop hyponatremia followed by CPM/EPM, you will probably have significant damage. To be honest, you probably won’t make it.

If you do live through those major health issues, you will be lucky to get a diagnosis of CPM/EPM. Here’s why: in most cases, if you are already in the hospital for something like severe burns, to help manage the pain, the hospital will sometimes put you into a medically induced coma. If you are in a coma, it is difficult for the hospital to know if you are experiencing neurological issues.

When they awaken you from the coma, they might deduce that the issues you are having are due to the induced coma. If you have cancer, they might believe the issues (nausea, headache, balance issues) are due to the cancer especially if you have something like a brain tumor and especially if you are having chemotherapy treatments.

Depending on your doctor’s expertise and the symptoms you present with, you may not get a diagnosis of CPM/EPM right away.

CPM/EPM can appear on a MRI as early as two to three days; however, it may not appear on a MRI for up to two to four weeks. In less severe cases of CPM/EPM, your symptoms can begin to improve within a week after the injury. This makes it even more difficult to detect because doctors are even more likely to attribute the symptoms to the primary reason for hospitalization, so they don’t look for it.

To complicate things further, most individuals will begin to experience a disappearance of the lesions on the MRI as early as 4 to 6 weeks. In most cases, the lesions can completely disappear in 4 to 6 months. Despite the healing of the lesions, symptoms may or may not approve accordingly. In most research papers that I read, most lesions will disappear but a person will have ongoing issues with dystonia, speech issues, cognitive and learning issues, tremors, etc. Generally, the symptoms that remain after the lesions have disappeared are related to motor functions and cognitive functions. There can also be on going issues with behavioral and psychological deficits.

This leads to a misdiagnosis, or you may not ever get a diagnosis.

So, what do you do?

Get your medical records. Look for hyponatremia (keep in mind that CPM/EPM does not always occur with hyponatremia), but it is most common with it.

You can also request a MRI. A really good neurologist and/or radiologist can see something called sequelae. Basically, this is, for lack for better words, scar tissue. It is usually very difficult to see in our current scans. So, if you really believe CPM/EPM is responsible for your issues, you might have to see several neurologists or radiologists.

Some doctors will diagnose you based on symptoms and your clinical history alone.

For arguments sake, let’s say you really don’t have CPM/EPM. If you have symptoms that aren’t typical for the disorders or diseases that you experienced, you should pursue getting answers anyway.

I’ve been a patient for more than 8 years. I’ve been diagnosed with other health issues/ disorders before I was injured from CPM/EPM. From past experience, it is common for doctors to attribute any new symptoms that you may have to the previous diagnosis. Basically, they think that since you have one disease or disorder that you will not be unlucky enough to develop another. They might also attribute these new symptoms to being a psychological issue. They will state that this new issue is due to the stress of having a previous illness.

Follow your gut instinct! Only you know what you are going through. If you keep getting the run around from one doctor, find a new one…BUT whatever you do, do NOT tell this new doctor that he is your second opinion. Trust me, I know. It is hard to find a doctor who will go against what another doctor has diagnosed.

It shouldn’t be that way, but it is. You may be very blessed and have a doctor whom you do trust, if that’s the case, level with them. If he’s a great doctor, he will look into new possibilities.

In the end, you should find a diagnosis that answers ALL the questions, fits ALL the symptoms. In your situation, look at the symptoms of your initial disorder/disease, and check out CPM/EPM symptoms. You have to a detective. You also have to be your own advocate.

If you’re able, look for information online. We are in a fantastic technological age where information is just a few key strokes away. Take advantage of it, but try not to be consumed by it. Easier said than done, I know.

I was trying to get into med school before I developed CPM/EPM. It happens to the best of us that the more we read about disorders or diseases, you start to believe you have every disorder that you read about.

To keep this from happening, I would recommend with coming up with your list of symptoms and the dates that they began BEFORE you start doing any research. Take your time in coming up with this list. It’s easy to forget little things, and you don’t want to begin adding things after you start researching because you’ll end up in the same position where you start thinking you have every disease imaginable.

Things to look for on the MRI. Previously, I mentioned that T1 and T2 MRI‘s showed high signal intensity; however, only T2 shows high signal intensity, but T1 shows low signal intensity. This means in T2 MR images, the areas of damage are bright, and in T1 the same areas of damage are darker than surrounding areas. This information might come in handy when you get your medical records. If you review your radiology reports, you might find these things defined, and this is what it means.

Sequelae: an abnormal condition that results from a previous injury or disease. If you are reading it on your radiology report, then it means that there was a previous injury that has caused an abnormality on your MRI.

An EEG may or may not show abnormalities. If there are abnormalities, than it is usually present in theta and delta activity. Usually these abnormalities will also improve in the following months.

J Neurol Neurosurg Psychiatry1998;65:119-121 doi:10.1136/jnnp.65.1.1, Parkinsonism and dystonia in central pontine and extrapontine myelinolysis:

…….bilateral hyperintense areas within the putamen, caput nuclei caudati, and lateral thalamus (figure). Subsequent control images made up to six months after the onset of the condition showed a marked decrease of these signal intensities. An EEG disclosed diffuse slow background activity and bilateral theta and delta activity which improved gradually during the subsequent months.

Next article:J Neurol Neurosurg Psychiatry2011;82:326-331 doi:10.1136/jnnp.2009.201764 Clinical and functional outcome and factors predicting prognosis in osmotic demyelination syndrome (central pontine and/or extrapontine myelinolysis) in 25 patients

The higher incidence of extrapontine lesions in recent series and ours may be due to the availability of better-quality MRI picking up subtle lesions. Also, the extent of involvement in the imaging depends on the interval at which imaging is done after the onset of ODS.2 21 The MRI done early (1–6 days) in six (24%) of our patients failed to show any abnormality. However, in all these patients, a repeat MRI done 1–2 weeks later showed positive findings. Therefore, we concur with the other authors that a repeat MRI after 1–2 weeks in all clinically suspected cases of ODS is very helpful.2 Also, diffusion MRI can pick up early lesions when conventional MRI is still negative.

CT was done in seven cases and was positive in two (28.5%). All had MRI-detectable lesions (n=23). Six required repeat MRI as the initial one did not reveal any lesion. The mean interval between the first and repeat imaging was 10.6 days in these patients (range 9–17 days). There were T1W hypointense and T2W and FLAIR sequence hyperintense lesions involving pons (76%), basal ganglia (76%) and thalamus (20%) (figures 1 and 2). Contrast enhancement was not seen in any of the cases. Diffusion-weighted imaging (n=3) showed a restricted diffusion in two cases. The radiological findings are summarised in table 3.

Okay, so since I’ve gone on a bit. Please trust me when I say, that this information comes up in pretty much every research paper. This is also a few more types of imaging that have been used to detect CPM/EPM that I wasn’t aware of previously. I do not know anything about what this means, so I will have to get back to you when I know for sure what it refers to, but TcTrodat-1 and 1-IBZM spect images show higher correlations with the severity of clinical features in EPM than MRI alone. (Annals of Nuclear Medicine 2009 23, 409-412.

In summary: MRI is the best method to diagnose CPM/EPM. It usually may not show the lesions until 1 to 4 weeks after injury. The CT scan is the worst at detecting damage. The spect images mentioned above might be a better way showing the damage that correlates to symptoms. The MRI signals usually detect the injury for a few months, but then shows improvements that do not necessarily correlate with the severity in symptoms. This is also true for EEG abnormalities. You may have an abnormal EEG, but improvements usually show within months but do not necessarily correlate to the symptoms you experience. Finally, trust your symptoms. If you had issues with hyponatremia while being hospitalized for a different condition, be sure to access your medical records and consult with one or more neurologists or radiologists to try to determine whether or not CPM/EPM is responsible for issues that seem unrelated to your original conditions.

I’m sorry for the length of this post. I hope it doesn’t ramble too much and that you find the information useful.

Many blessings!

UPDATE: 04/20/12….I just wanted to leave a little bit more information regarding imaging. I mentioned above the FLAIR imaging, and I wanted to explain exactly what that is.

Fluid-attenuated inversion recovery (FLAIR) Magnetic Resonance images stands for FLAIR MRI. It can be used in a two dimensional form or 3D form. This type of imaging can produce an image without showing the fluid in the brain. This type of imaging is used to detect lesions in the brain, and is very useful in diagnosing demyelinating lesions. It is supposed to be a great way to determine lesions caused by MS. I do not have a lot of information regarding CPM/EPM lesions, but it is being used in diagnosing it along with standard MRI’s.

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged CPM/EPM, CT scan, Electroencephalography, epm, FLAIR MRI, Hyponatremia, Magnetic resonance imaging, MRI, neurology, Parkinsonism, radiology

16 Jan 2012

A Lovely Chart for Who is at Risk for Hyponatremia:

Hello, my friends and followers….

I know it has been several days since I’ve last posted, but it’s not because I’m losing interest, I swear. Please be patient with me. I am truly inflicted with EPM, and one of my biggest issues is with concentration and memory (which is EXTREMELY frustrating for a person who used to be able to open a 1400 page textbook and find a sentence in a matter of minutes).

Now, I read through a few research articles and I literally can’t remember what exactly it is that I read or where I read it 😦 However, in my ambition, I still believe I can read through 8 to 10 articles in a night and be able to keep it all straight, but I CAN’T.

I can’t remember what it is I read, and if I do remember something I read, I can’t find the article it was in, so I’m having to experiment with methods to keep everything organized.

It’s not working very well. I never had to do it before, so I’m finding that my ability to do it SUCKS or maybe it’s not so much ability as the disability of having EPM.

SO, here’s the thing. I have found tons of new information (or at least I think it’s new..can’t quite remember if I’ve added these things or not, and I tried to go back through previous posts, but can’t keep those straight either 😦 ) . Ok, so I hope it’s new, but if it’s not..PLEASE let me know!

Anyway, I have a lot of information that I want to add to these posts and updates. I will try to add information to older posts where I believe it fits, but I also don’t those who have read the previous posts to have to keep going back to find out about the new information, so I’m going to have to think about a way to keep updates easy to find. Maybe have an updates category/ post section.

Well, for now, here is a really helpful table that shows several categories for those who are at risk for developing hyponatremia. It’s something I just found, and I was surprised that it contained some additional at risk groups that I didn’t mention (didn’t think that was possible).

Normally, I would love to post a link to this, but I can’t. It’s a PDF, and I’m just not that PC savy, so if you would like to find out more, please research the article below:

Diagnosis and management of hyponatraemia
in hospitalised patients
P. Reddy, A. D. Mooradian

This was found in the International Journal of Clinical Practice, October 2009, 63, 10, 1494–1508

(Okay, I lied: here is the link to the free article: http://onlinelibrary.wiley.com/doi/10.1111/j.1742-1241.2009.02103.x/abstract )

The information taken directly from the link above:

Table 4. Drug-induced hyponatraemia
SSRI, selective serotonin reuptake inhibitor; TCA, tricyclic antidepressant; MAOI, monoaminooxidase inhibitor; MDMA, methylenedioxymethamphetamine; NSAID, non-steroidal anti-inflammatory drugs; ACE, angiotensin converting enzyme.
Anti-psychotics Phenothiazines Haloperidol	Anti-depressantsSSRI’s TCA’s MAOI’s Bupropion	Anti-convulsants Carbamazepine, Oxcarbazepine, Sodium valproate	Analgesics & Recreational drugs Morphine (high doses), Tramadol, MDMA (Ecstasy), NSAID’s, Colchicine, Venlafaxine, Cymbalta (duloxetine)
Cardiac drugs Thiazides, clonidine, ACE inhibitors, Aldosterone antagonists, Amiloride, Loop diuretics, Methyldopa, Amlodipine, Amiodarone, lorcainide, Propafenone, Theophylline, Terlipressin, Unfractionated heparin (aldosterone antagonist)	Anti-diabeticsChlorpropamide, Tolbutamide, Glipizide Lipid lowering agentsClofibrate	Anti-neoplastic agentsCyclophosphamide Vincristine Vinblastine Cisplatin, Hydroxyurea, Melphalan Immunosuppressive drugs Tacrolimus, Methotrexate, interferon α and γ, levamisole, Monoclonal antibodies	Antibiotics Azithromycin Trimethoprim-sulfamethoxazole, ciprofloxacin, cefoperazone/sulbactam, rifabutinGastrointestinal drugsSomatostatin analogs, Omeprazole OthersBromocriptine

Table 5. Non-drug induced causes of the syndrome of inappropriate ADH secretion (SIADH)
Non-osmotic stimuli	CNS lesions	Malignancies	Increased intrathoracic pressure
CVA, cerebrovascular accident; HIV, human immunodeficiency virus; TB, tuberculosis; CHF, congestive heart failure.
Nausea	Tumours (neuroblastoma)	Lymphoma, leukaemia, and Hodgkin disease	Mediastinal tumours (thymoma, sarcoma)
Pain	CVA	Carcinoma of the uterus	positive pressure ventilation
Stress	Meningitis	Ureteral, prostate, bladder carcinoma	Infections (pneumonia, TB, aspergillosis, lung abscess)
HIV	Encephalitis	Carcinoma of duodenum and pancreas	Bronchogenic carcinoma, mesothelioma
Acute psychosis	Abscess	Ectopic production of vasopressin by tumours (small cell lung ca, carcinoids	Bronchiectasis
Surgery	Guillain–Barré syndrome	Cancers of the head and neck and nasopharynx	Empyema
Pregnancy (physiological)	Hydrocephalus	Renal cell carcinoma	Chronic obstructive pulmonary disease
Hypokalaemia	Pituitary stalk lesion	Osteosarcoma	Pneumothorax
CHF exacerbation	Delirium tremens
	Demyelinating disease
	Acute porphyria

I really found this article to be extremely detailed and informative regarding hyponatremia!! I really recommend it. However, it should be digested in small quantities because there is a LOT of medical lingo, etc. I consider it one of the top research articles for hyponatremia. I give it 5 stars 🙂

Anyway, please bear with me. There will be tons more to come. It will just take some time.

Posted in What is Hyponatremia? and tagged Analgesics & Recreational drugs, Anti-convulsants, Anti-depressants, Anti-diabetics, Anti-psychotics, Antibiotic, Cardiac drugs, CPM/EPM, epm, Gastrointestinal drugs, Hyponatremia, Immunosuppressive drugs, SIADH

09 Jan 2012

Treatments: NEW INFORMATION

Ok folks, I’m really hoping to keep this post short and sweet.

My last post had information regarding treatments for CPM/EPM. Guess what, I have found new information suggesting there are treatment options for CPM/EPM.

I was shocked to discover that once your sodium levels have been corrected too quickly, you are not destined to CPM/EPM. You doctor has the ability to PREVENT CPM/EPM AFTER your levels have been corrected too quickly. Research has shown that there is an approximate 5 DAY window in which your doctors can LOWER your sodium levels back to abnormal, approximately 120. If they do this after your levels were raised too quickly, within 5 days, CPM/EPM can be avoided!!!

The above information was discussed as early as 2005 and 2007: http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/104/6/56.pdf and again in : http://www.ccjm.org/content/74/5/377.full.pdf and again in:

This type of treatment has been extremely successful in preventing CPM/EPM. I DO NOT UNDERSTAND WHY DOCTORS DON’T KNOW THIS or DO NOT PRACTICE THIS. I’m really at a loss over why my doctors, who admitted to me that they raised my levels too quickly, did not have the knowledge to do this. It turns my stomach to think that this might not be COMMON knowledge among doctors. WOW.

Since this might not be common knowledge among doctors, PLEASE take it upon yourself to inform them if you are in this situation. You might be able to prevent your brain damage after all!

That said, I also found additional treatment options! I went to one of the major teaching hospitals in this country for treatment of my CPM/EPM, and they DID NOT offer this! They told me that there were NO TREATMENT OPTIONS. Imagine my shock and dismay at finding research to the contrary. It really makes me sick to my stomach to think not only could this have been COMPLETELY PREVENTED, it could have been TREATED. 😦

That said, these treatments have not been clinically proven to work. There haven’t been any control group studies.

I mean, here’s the thing, CPM/EPM is uncommon. It’s not like heart disease or cancer where people can enroll in studies to test therapies, so your doctor may or may not know about these treatments. If they know about them, they are not going to suggest you forgo the treatment since it hasn’t been studied in a controlled study. They will suggest to do the treatment. If you don’t do the treatment, you have an approximate 67% probability of having some type of neurological deficit for the rest of your life.

The research studies did not report ANY side effects (I’m sure there are), so proceeding with these unstudied/ unproven treatments would be the best thing. Furthermore, all of the case studies that were listed had a 100% recovery when given the treatments.

In other words, there needs to be more research regarding CPM/EPM, but in the mean time, if you are facing permanent neurological issues, try these treatments that have shown effective in treating the brain damage. What do you have to lose???!

Here are the additional treatments that I did not mention previously:

1.) plasmaphoresis

2.) TRH (thyrotropin releasing hormone)

3.) immunoglobulins

4.) methylprednisolone (the cleveland clinic journal also listed dexamethasone, but it did not provide information regarding its effectiveness.)

This information comes from :http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/104/6/56.pdf

It has also been reported in several additional journals.

There are also natural remedies that have been recommended. I will post more information on possible natural treatments as well.

Please feel free to post any information you have in regards to treatments you might have been given for CPM/EPM.

Thank you for reading!

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged Central pontine myelinolysis, CPM/EPM, Hyponatremia

07 Jan 2012

CPM: Treatments

I hope you are doing well. It has been several days since I posted last. I could list several crazy reasons: I was in the hospital having a sleep study. They didn’t have WiFi at the hospital, so I couldn’t use my laptop. Tom was sick. However, honestly, the biggest reason is I didn’t know how to continue with this topic.

It might seem obvious that it is easy for me to get distracted and get off topic. (I hope not). I think my last post on CPM/EPM might have demonstrated this a little more than normal.

I covered a lot of material in my last post. Several of the topics I mentioned, I feel, could be made in to separate posts. I might try to do this at a later time, which means that I might have some topics come up more than once. Please be patient.

Okay, so CPM/EPM treatments:

There really aren’t any treatments, as far as a cure. You will find this information on any resource regarding CPM. For your convince, I’ve included this quote from, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001779/.

There is no known cure for central pontine myelinolysis. Treatment is focused on relieving symptoms.

The following quote is from a study that suggests the following has been used in the treatment of it:

Case reports have suggested that steroids, intravenous immunoglobulin, and thyrotropin-releasing hormone may be helpful; however, there are no findings from a large-scale trial to support the use of these therapies.

(http://radiographics.rsna.org/content/29/3/933.full)

You may be given prescriptions for movement disorders (tremors, shakes, twitches). These are usually the same type of drugs that treat parkinsons. You may be given pain meds. You might need to see a pain management specialist. You may need anti anxiety/anti depressants. You may need medicines for insomnia or for central nervous system sleep apnea.

You may need on going physical and occupational therapy. You will probably need speech therapy.

You will probably be given anti-depressants or anti- anxiety medicines because let’s face it, the pill you are forced to swallow is unbelievably bitter.

I know that sounds a bit scary. It is. It is terrifying because the doctors have no way to know what is going to happen to you, so they won’t be able to provide you with much information.

If they’re honest with you, they will tell you that you could slip into a coma at any point in time, die, or slip into something called locked in syndrome.

In a series of 44 patients, myelinolysis
occurred after a mean of 6.3 days (range 3–11)
and resulted in a “locked-in” syndrome in 23
patients.

The above information was provided by: http://www.ccjm.org/content/74/5/377.full.pdf

Personally, I think the locked in syndrome is the most terrifying because you will lose all ability to move. It’s a FULL body paralysis. The only thing that you will be able to move is your eyes, but you’re aware of what is happening.

Some studies state that you are at risk to develop these severe health issues (coma, death or locked in syndrome) up to 12 weeks after developing CPM/EPM. Other studies, suggest that it is up to 8 weeks. Frustratingly, there is not enough information regarding CPM/EPM to know for sure.

In most cases, the hospital will keep you under observation for at least 7 days depending on how severe your symptoms are. In other cases, you may be hospitalized for up to 21 days for observation. If you go into a coma or locked in syndrome, you may be hospitalized for 4 to 12 weeks, if not longer.

Here’s the thing, if you are being released in this 7 to 21 day period, I highly recommend that you remain in contact with your doctors that were monitoring your for the CPM/EPM. If you experience ANY changes after being discharged, GO TO THE ER. Err on the side of caution with CPM/EPM. Being wrong is better than being dead.

If you’ve developed CPM/EPM, you’re already unlucky. You’ve already fallen into the less than 1% to 5% range by developing it, and NO ONE really knows what will happen, so err on the side of caution if you experience ANYTHING that gives you concern.

I want to stress that it’s important to return to the hospital that was treating you because most hospitals have never treated a patient with CPM/EPM. Most doctors have only read about it in textbooks. If your hospital treated you, then they might have experience with it.

Your life has just been changed tremendously. If you’re reading this, then you are EXTREMELY luck and terribly unfortunate at the same time. You are terribly unfortunate in developing CPM, but EXTREMELY lucky that you are even alive.

It’s going to take time to adjust to your new abilities, and your journey is just beginning.

Now, here’s the thing. No ONE knows what is going to really happen with you.

Depending on the severity of your symptoms, you may improve significantly. Some research suggests that you may recover COMPLETELY. However, I question this on the basis that research is vague.

In long-term
follow-up of 32 survivors of the acute phase of
central pontine myelinolysis, 11 had no functional deficit, 11 had minor neurologic
deficits, and 10 had severe deficits requiring
dependent (ie, long-term) care.

The above quote comes from the article used previously. Use the ccjm.org link above to access it.

The widely used study above suggests, that 1/3 of patients will recover, a 1/3 of patients will have symptoms but live independently, and a 1/3 will need to have assisted living.

This study was vague. It didn’t say how long the patients had CPM. Was it 3 months, 6 months, 10 years after developing it?

I would like to suggest that unless you die, you are going to improve. I would like to suggest that everyone who has CPM (except for those who die) will improve to some degree to an almost normal, pre-injury state. However, it is not known if this type of improvement is absolute or to what degree you will improve.

The study quoted above, also explained that depending upon the location of the lesions, a person might experience a decline in neurological abilities. I know several persons who have it, and after a period 2 to 3 years, they begin to experience a deterioration in their neurological symptoms.

Some studies have stated that the majority of persons who have CPM, die within 5 to 10 years after developing. More than half commit suicide.

Please be aware, if you are a care giver for someone who has CPM, that more than half commit suicide.

Because of this alarming statistic, I highly recommend getting your loved one supportive psychological therapy. I also recommend that they participate in online support groups.

Brain injury support groups offer a great help.

I looked for months, and found only a handful of people who have CPM through inspire.com. We’re kind of outcasts since there are so few of us, so we don’t really fit into any other neurological support groups.

I hope to change that at some point in time, but right now, please contact me with questions. Please post your story for others to read. Together, I hope we can prevent people from going through this horrible experience.

UPDATE:

It is always depressing to learn that there are TREATMENTS for CPM/EPM, and to know that I could have been fixed if I received one of these treatments! I hope and pray that if you have CPM/EPM or know of someone who has been diagnosed that you will get this information during a period when it can provide relief. The following quote comes from an abstract, so if you provide this information to the doctor, they should be able to get the treatment information:

Clin Neuropharmacol. ;23 (2):110-3 10803802 Cit:11

Immunoglobulins are effective in pontine myelinolysis.

[My paper] J Finsterer, E Engelmayer, E Trnka, M Stiskal

Neurological Department, Neurological Hospital Rosenhügel, Vienna, Austria.

Although the exact pathogenesis of central pontine myelinolysis (CPM) is unknown, correction of hyponatremia, thyreotropin releasing hormone, plasmapheresis, and corticosteroids seem to be effective. Assuming intravenous immunoglobulins (IVIG) to also be effective in CPM, 0.4 g/kg body weight/d immunoglobulins were applied to a 48-year-old patient who developed CPM with double vision, dysarthria, dysphagia, and left-sided hemiparesis 3 weeks after spontaneous normalization of hyponatremia. After 5 days of IVIG, his symptoms markedly improved, confirmed by improvement in the Norris score (42%), Frenchay score (19%), Kurtzke score (20%), Disability score (54%), vital capacity (26%), and peak torque (69%). The promising clinical effect of IVIG was assumed to be caused by the reduction of myelinotoxic substances, the development of antimyelin antibodies, and the promotion of remyelination. In conclusion, IVIG appear to be a promising therapeutic option in CPM.

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged Central pontine myelinolysis, CPM, CPM/EPM, Locked-in syndrome, neurological disorders

Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “CPM/EPM”

What was I thinking:

02/23/2012

Dystonia (cramping):

Tremors:

02/17/2012

My EPM story: the diagnosis:

Doctors:

Getting a diagnosis:

A Lovely Chart for Who is at Risk for Hyponatremia:

Treatments: NEW INFORMATION

CPM: Treatments

Recent Posts

Archives

Categories

Meta

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “CPM/EPM”

Post Navigation

Recent Posts

Archives

Categories

Meta