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Old 12-05-2014, 10:24 AM #1
Brain patch's Avatar
Brain patch Brain patch is offline
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Join Date: Feb 2013
Location: Salt Lake City, Utah
Posts: 520
10 yr Member
Brain patch Brain patch is offline
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Join Date: Feb 2013
Location: Salt Lake City, Utah
Posts: 520
10 yr Member
Default Need Support Desperately- Parkinson's Disease?

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
__________________
Brain patch.
.


Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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ger715 (12-05-2014), Lara (12-05-2014)

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Old 12-05-2014, 05:44 PM #2
Lara Lara is offline
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Join Date: Sep 2006
Posts: 10,984
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Lara Lara is offline
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Join Date: Sep 2006
Posts: 10,984
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Hi Brain Patch,

I'm really sorry to read what has been going on for you lately with these new episodes of paralysis. That is very worrying.

You really must go to the doctor.
Write down a list of what's been going on for you so that when you're at the doctor's office you will have that with you and won't be so overwhelmed.

Perhaps these episodes are connected to your sleep disorder?

It might seem a silly question in light of all that you have talked about, but you're not diabetic are you?

EDITED to add: I just read your sig file after I posted and you say you have hypoglycemia. How is that treated? Have you been going and having regular tests and have you been tested recently?

take care of yourself.
Please go to the doctor. It's not good for you to worry that you have the same condition as your father had. You may not have that at all. The only way to find out is to get professional advice.

Keep us updated.
Quote:
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.
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"Thanks for this!" says:
ger715 (12-05-2014)
Old 12-05-2014, 11:58 PM #3
ger715 ger715 is offline
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Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
ger715 ger715 is offline
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Posts: 2,180
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Quote:
Originally Posted by Brain patch View Post
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

Some of the symptoms resemble my brother whose started 6 or 7 years ago with Parkinsonism. It has progressed some; but he has been taking meds prescribed by his doctor/ neurologist. He has been receiving some therapy including use of his hands/fingers. He is doing pretty well with the medication, etc.

I can't help but wonder if dealing with your Dad's illness might be causing you to feel many things resemble his illness. His illness may have nothing to do with what is happening to you at all. You MUST see a doctor. There may be no need to be continually dealing with this mental stress. With proper diagnosis and treatment, you may find you are no where as bad off as you fear.

Please take care of yourself.


Gerry
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