Dear Newly diagnosed group,
I am so glad to find this group. I just got diagnosed this
summer and am still working my rheumatologist and neurologist
to get treatment started.
I am so excited as I am 60 years old and my neurologist thinks
that my lupus began when I was 12 years old after what they
then thought was encephalitis following the German Measles or
Rubella.
I have two brothers who have lupus and so does my Mother.
I come from a family of ten children. So I make the third sibling to
get diagnosed with it.
I am also a head injury survivor. I have epilepsy from that and I think
that is what made it hard for doctors to get their act together.
Last November 20th, 2007 I was wheeling down the street where
I live in my wheelchair to go to the small corner store. One of my neighors
was upset with her husband and had been drinking the night before.
She was going 45 miles an hour in a 15 mile per hour speed limit
and hit me from behind. I was thrown 15 feet from my wheelchair.
After that my seizures went way out of control. I have grand mal seizures.
And my pain level was a constant 10 on a scale of 1-10 with 10 being the
worst. I had already been going to a pain clinic and the response I got
from the doctor was that my pain shouldn't have gotten worse.
Since I am a survivor of domestic violence, their assumption was
that my increased pain, etc. was all from psychological trauma and
they had me see this therapist. She didn't know anything about seizures.
I had one in front of her and got all bruised up because she didn't
even try to keep from bumping into the book case I was sitting next to.
Anyway in May I had what was thought to be a severe allergic reaction.
The emergency room doctor gave me prednisone for the reaction for
a week. By the fourth day my butterfly rash on my face began disappearing
,my pain level went way down and I finally went a whole week without
a grandmal seizure. I then knew what was going on and made an appointment
to see my pain doctor. His response was that since I felt better I must
be an addict. I was furious. He just dismissed me again. Since I only had prednisone for a week the feel better didn't last long.
Two weeks later I stopped urinating and looked like I was 20 months
pregnant. I ended up in the emergency room again and got referred
to a rheumatologist. Dr. Crout is super great. He and my neurologist
may be the only doctors I ever talk to again!!!!
Anyway this is the point I am at now. Sorry my message is so long.
Have a blessed day:rotfl:
Marcille--Jo Ann is my first name
I am so glad to find this group. I just got diagnosed this
summer and am still working my rheumatologist and neurologist
to get treatment started.
I am so excited as I am 60 years old and my neurologist thinks
that my lupus began when I was 12 years old after what they
then thought was encephalitis following the German Measles or
Rubella.
I have two brothers who have lupus and so does my Mother.
I come from a family of ten children. So I make the third sibling to
get diagnosed with it.
I am also a head injury survivor. I have epilepsy from that and I think
that is what made it hard for doctors to get their act together.
Last November 20th, 2007 I was wheeling down the street where
I live in my wheelchair to go to the small corner store. One of my neighors
was upset with her husband and had been drinking the night before.
She was going 45 miles an hour in a 15 mile per hour speed limit
and hit me from behind. I was thrown 15 feet from my wheelchair.
After that my seizures went way out of control. I have grand mal seizures.
And my pain level was a constant 10 on a scale of 1-10 with 10 being the
worst. I had already been going to a pain clinic and the response I got
from the doctor was that my pain shouldn't have gotten worse.
Since I am a survivor of domestic violence, their assumption was
that my increased pain, etc. was all from psychological trauma and
they had me see this therapist. She didn't know anything about seizures.
I had one in front of her and got all bruised up because she didn't
even try to keep from bumping into the book case I was sitting next to.
Anyway in May I had what was thought to be a severe allergic reaction.
The emergency room doctor gave me prednisone for the reaction for
a week. By the fourth day my butterfly rash on my face began disappearing
,my pain level went way down and I finally went a whole week without
a grandmal seizure. I then knew what was going on and made an appointment
to see my pain doctor. His response was that since I felt better I must
be an addict. I was furious. He just dismissed me again. Since I only had prednisone for a week the feel better didn't last long.
Two weeks later I stopped urinating and looked like I was 20 months
pregnant. I ended up in the emergency room again and got referred
to a rheumatologist. Dr. Crout is super great. He and my neurologist
may be the only doctors I ever talk to again!!!!
Anyway this is the point I am at now. Sorry my message is so long.
Have a blessed day:rotfl:
Marcille--Jo Ann is my first name
