Originally Posted by Brain patch

Hi Everyone,

I am not exactly new to the site but have not posted for a long time. I had
been semi-stable with medication for a few years. But all hell has broken loose.

I have had chronic pain for many, many years and have been diagnosed with
Other things also. But, I have been getting WAY worse recently and am
realizing that I have something undiagnosed. Something really bad.

I have been having episodes of paralysis. I literally cannot move at times for hours. Sometimes I go for days without having any (or very little) control
over my muscles and movement. To the point that I cannot even eat because
I can't hold (manipulate) fork etc. : ( let alone prepare a meal.
I am just completely down on the couch or in bed. Doing ANYTHING has become
almost impossible. Is impossible at times now.

It starts with just completely loosing my mental functions all together and then
progresses into not being able to move, no muscle control, very painful and
I mean painful muscle cramping. I am terrified. I feel very suicidal to be honest.

My dad passed away this last February and he died from Multiple System Atrophy. I took care of him and watched him become completely paralyzed.
I am so glad I was able to be here for him because family and other people treat
you so badly when you have chronic illness. They get mad, frustrated etc. with
you and it is very hard. At least he had someone kind, loving, understanding.

I noticed that I have ALOT of the same symptoms as
my dad. Including a REM sleep behavior disorder that is considered a "precursor"
to this disease or Parkinson's Disease. The MSA is considered "double Parkinson's Disease".

I have not seen my doctor since these episodes of complete paralysis have
started (just after Thanksgiving- I overdid it helping my mom). I am so
upset that I don't even know how I am going to be able to speak to tell my
doctor what is happening. I realize that this movement problem has been a
huge part of what has been happening to me for years along with extreme
pain. I was just never able to really explain what has been happening to me.
It has been very confusing.

Thanks to anyone who read this. I have no support. No one to talk to. No one
who can understand in anyway. I am so scared.

Brain Patch