Hello. I have demyelinating disease. My Head really hurts. The Neurologist and orthopedic surgeons are speaking words to me that I dont understand. Apparently the nerves in my brain are dying and some parts of the brain are already dead. They`ve put me on heavy tranqiulizers and beta blockers. There is also evidence of Arterial Damage in my neck. I struggle with ocassional blindness in both eyes, as well as memory loss. I cant sleep. I have many tests that I have to go for with many doctors to see. they said that there are 18 scars that are in and on my brain as well as some open wounds that seem to be clotting. I honestly dont know why I am still alive. I feel sick. and the World is tilted to the left to anyone who reads this? can you tell me what to expect.
Diagnosed with the disease March 2002
P.S. I was a Trucker for 14 years. They took away my AZ and regular drivers licence.
I lost my Job as well and sometimes cant talk right, My words are slurred and my arms and legs will sometimes jolt out and shake for awhile. IS THIS NORMAL!!!!!!! OR IS IT GONNA GET WORSE?
I started a new thread as this needs some attention and was buried in another thread.
Here is my take on this. You need to go back to the neuro and orthopedic surgeon, and take someone with you who can help figure out what is going on with you. What KIND of demyelinating disease you have is important to know, as they're treated differently, with different kinds of medicines.
The phrase "open wounds that seem to be clotting" in your brain doesn't make sense. The "18 scars" could be "18 lesions", or white spots, that indicate active disease progression, and the "clotting" could be that some are healing up..but that's not typical language to describe that process, so it's important to know exactly what you have.
And you say you were diagnosed "March 2002", four years ago. You really need to find out more clearly what you're dealing with, and then maybe we can offer some help.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....