This is it, a new exciting opportunity for possibly reversing the damage caused by Central Pontine Myelinolysis (Osmotic Demyelination Syndrome), and Extra Pontine Myelinolysis.
I was contacted late last week by Dr. James Yarger with ENDECE biopharmaceutical company. He is researching potential drugs to rebuild damaged myelin sheaths due to Multiple Sclerosis, Central Pontine Myelinolysis and Extra Pontine Myelinolysis.
This is the most promising opportunity for those of us who have suffered from CPM/EPM. The company is looking for interested participants to try the drugs.
The potential to regain any of our health is a magnificent prospect.
If you are interested in finding out more, I would highly encourage you to reach out to Dr. Yarger.
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.
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.
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:
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