If you’re reading this, you or someone you love has probably been diagnosed with CPM/EPM. First of all, I’m sorry. My heart goes out to you or your loved one that’s inflicted with this disorder.
Right now, you’re probably confused, angry, depressed, and scared. You have no idea what’s going on, except your body isn’t right. You aren’t right. You might feel crazy because things that you experience can vary so dramatically. Let me offer you this solace; you are not alone.
You want answers, and you can’t find them. You want a support group, but there isn’t one.
Your doctors don’t have many answers either, or you’ll get conflicting information from the different doctors you see.
The information you find online is repetitive, but not very informative. Trust me. I will go through dozens of websites, and the information is verbatim from what was posted by the National Institute of Health.
Right now, you might feel that the answers to your questions are coming from a magic 8 ball.
I hope to give you more depth information, but I want to stress to you that there is no definitive answer with CPM/EPM. It is rare. There are not long term case studies. You will find research papers that have gone through hospital records to study CPM/EPM cases because it is difficult to find more than just a few current cases in a state during a specific period of time.
There is not a lot of research that has been done on it at all, but the long term studies that have been used are done by going through hospital records. I find those studies are vague.
How it impacts you, may not be the same as how it impacts me.
I know it doesn’t sound too promising. I hope to give you more direction, more help, more answers, but I can’t say that you will fit into everything I post. You may. You may not. There is no absolute.
Ok, so what has happened to you or your loved one:
Lesions have developed in your (their) brain. It’s caused extensive neurological and functional damage.
Why has this happened:
The majority of CPM/EPM cases are caused by the too rapid correction of hyponatremia; however, there are a handful of other people that develop it outside of this category. I’m going to try stay focused on the majority and over time, I hope to cover some of the reasons outside of hyponatremia for developing it.
What can you do to fix it:
There is no definitive treatment for CPM/EPM. There have been studies where they have tried steroids to reverse the effects of the damage or prevent new damage from occuring, but this was inconclusive.
Honestly, I would recommend trying it. It can not harm you, and it might help, but again that treatment is inconclusive. Other than that, the treatment is supportive.
What does that mean? It means, they will do everything they can to prevent you from dying, and they will minimize your symptoms.
So, let me explain a little bit more in detail what’s happened to your brain. (I’ve explained a little bit of this previously in my posts on hyponatremia, so if you’re followin my posts, please bear with me).
When a person’s sodium levels drop below normal, certain cells experience a shift in water. The major system effected by this shift is the nervous system. Your brain cells begin to swell from fluid. This type of swelling happens in both acute and chronic hyponatremia.
In acute hyponatremia, the cells swell so quickly that it can lead to rupture of the brain stem and significant cerebral swelling. This type of hyponatremia produces immediate dangers and has a significant risk for death, coma, and/or seizures.
If a person has chronic hyponatremia, the drop in blood sodium happens slowly. Most people will associate chronic as meaning in months or years, but this isn’t what it means in the case of hyponatremia. Chronic in regards to hyponatremia means approximately 48 hours to several weeks.
If a person has the chronic form of hyponatremia, then their brain cells also swell, but the swelling is more gradual, and their body has time to adapt. This is the reason why persons with chronic hyponatremia, despite feeling sick, will be more alert and less severly symptomatic than a person with acute. They are at less risk for immediate death, but they are at greater risk for CPM/EPM if the treatment isn’t performed correctly.
If a person has chronic hyponatremia, they still have brain cell swelling.
If the sodium levels are raised too quickly, the water “rushes” from the brain cells, and this causes the cells that form the myelin sheath and cells that produce myelin to be destroyed or damaged.
This is a very generic description of what happens, and there is debate on how the damage occurs, but this is the most widely used description.
Myelin is a layer of cells that coat the axons of nerve cells. It’s considered a fatty sheath that insulates the nerve cell and allows for rapid conduction of nerve impulses.
Most people will explain myelin as being like the sheath that surrounds electical wires. This is somewhat accurate. I think the most important point regarding that analogy remains true: if the electrical cord wears, the connection becomes bad. The item may or may not work after that or may work intermittently.
Due to the whitish appearance of axons covered in myelin, areas of the brain that contain myelin are called white matter. These specific areas of the brain tend to be damaged with the rapid correction of sodium.
The damage can not be detected through a CT scan. It can be detected by MRI.
The areas of damage will show up as a brighter white area on the MRI scan in a T2 scan. Contrast dye does not really make the lesions more distinguishable, but most doctors will order the MRI with contrast. In a T1 scan, the lesions show as hypotense. These are the same lesions, it just shows up differently depending on the scan that was used.
If the pontine area is abnormal, the condition is called central pontine myelinolysis. If areas outside of the pontine area are affected, the condition is called extrapontine myelinolysis.
The injury may be limited to only the pontine area. It may be limited to areas outside the pontine only, or you may have both pontine and extrapontine injuries.
Let me stress, these are very generic descriptions and in the following posts, I will go into great detail regarding what all of this means, and what the research I’ve found says regarding these topics.
Please consider this post as a savory smell of the roast that is in the oven. It’s not even a taste of the information that will be exposed in future posts.
I hope this post finds you in good health.