New to the group and Neurosarcoidosis

[Guest guest]

Hey all,

Finding out that I have Neurosarc took me on a long and

weird " adventure " Feb 28 2007 I woke up and my right eyes was

unevenly dialated and there was sort of a film over my eye, since I had

just gotten out of the shower I didn't think too much into it. I went

ahead and had my mom take me to work because it didn't go away by the

time I had to go. I was at work for about 4 hours and noticed that my

vision was off, blurred, and I couldn't focus. I had already made

myseld an appointment to see my GP and was leaving soon to go. I got

up and I was walking like I was blind touching the walls and grasping

for anything for balance. Thankfully, my mom had taken me in that day

because when I got into the car her face dropped, I looked in the

mirror and to my horror my eyes was completely dialated, my face was

limp, and my eyes was shot to the upper right corner of my eyelid. All

I could do was cry, well hyperventalate is more like it. We went to

the ER and several tests were done there. Everything including CT

scans and blood work were coming back normal. They decided that I

should go see an eye doctor and made a recommendation. I went to the

eye doctor straight from the ER and a full exam from him he told me

that my vision was fine and that the worst case senerio is that I have

an aneurism and that I should see a neurologist. Whoopi another

doctor! Luckily, I got into a WONDERFUL doctor. Before I even met him

he had me have full body MRI'S with and without contrast, EEG, vision

testing, and full blood workup. Later that day I met one of the men

that probably saved my life. I was trully intimadated by the 6

something large frame and gruff voice. He told me that my MRI's were

abnormal and he was seriously concerned why. I was then sent in for a

lumbar puncture that night. Of course there were some abnormal cells

but all of the testing for viruses, bacteria, and sorts were coming

back negative. That's when the word lymphoma was first brought

across. The nerves started up and I didn't know what to think. The

only thing that ran through my mind was my beautiful 6 month old at the

time, my family, and the fact that I'm 23 years old what the heck is

going on! I was in the hospital in my town for about three days.

Since I was on antibiotics and everything was coming back fine and my

eyes was going back to normal they decided that maybe a good rest at

home while they think about this would be good for me and it was.

Later that evening though I got a phone call from my Neurologist, Dr.

Dove, stating that he was extremely concerned that he wasn't going to

let this go and that we were going to do one more test a PET scan to

make sure it wasn't cancer. Apparently my MRI's showed severe

inflammation in my brain and spinal cord which was causing pressure on

my third cranial nerve which made my eye go wacko. Monday, morning

March 5th I had the PET scan and it showed no sign of cancer, but I was

having a new symptom, horrible sharp pain in my left arm. Dr. Dove

decided I needed more help than what he could give me so off to

Jewish Hospital in St. Louis I went. I was there for a month enduring

several tests to find out what was going on. In the process I had a

few lumbar punctures, emg, mri ct scans, blood work duh, nerve and

muscle biopsy, bone marrow biopsy, broncheal biopsy, and probably some

things I was too drugged up to remember. The final thing was on March

23 2007 I had a double brain biopsy to deteremine that I did have

neurosarcoidosis. The reason why they had to go to extremes was that

all of my other biopsies were coming back negative for sarc and they

couldn't take the chance that it was NS and treat it when it may have

been brain cancer. If it was brain cancer the prednisone that you give

to treat NS would have spread the cancer throughout my body and I would

have been dead in three months. After the surgery I was put in extreme

high dosages of prednisone. Dr. Clifford my neurologist at

(wonderful doctor too) wanted to be aggressive with my treatment

because it was advanced enough that we needed to. I was on 80mg a day

and have now tappered to 20mg daily with 15mg of methotraxdate once

weekly. As far as now only a little more than six months later, my

eyes in completely normal, my pain in my arm is gone, and I have made a

full recovery from the surgery. Yes there have been some side effects

to the medications I take but overall I'm an extremely blessed person.

I wanted to share my story for two reasons first one is self-ish in the

aspect that it's just nice to vent and let things out and the second is

to put another story out there that maybe someone can relate to and

know that you aren't alone because there groups like this one, my

loving family, all of the wonderful, kind doctors, nurses and medical

staff I know that I'm not alone in this.

Thank you for taking the time if you did. Please feel free to respond

anytime.

[Guest guest]

Hey all,

Finding out that I have Neurosarc took me on a long and

weird " adventure " Feb 28 2007 I woke up and my right eyes was

unevenly dialated and there was sort of a film over my eye, since I had

just gotten out of the shower I didn't think too much into it. I went

ahead and had my mom take me to work because it didn't go away by the

time I had to go. I was at work for about 4 hours and noticed that my

vision was off, blurred, and I couldn't focus. I had already made

myseld an appointment to see my GP and was leaving soon to go. I got

up and I was walking like I was blind touching the walls and grasping

for anything for balance. Thankfully, my mom had taken me in that day

because when I got into the car her face dropped, I looked in the

mirror and to my horror my eyes was completely dialated, my face was

limp, and my eyes was shot to the upper right corner of my eyelid. All

I could do was cry, well hyperventalate is more like it. We went to

the ER and several tests were done there. Everything including CT

scans and blood work were coming back normal. They decided that I

should go see an eye doctor and made a recommendation. I went to the

eye doctor straight from the ER and a full exam from him he told me

that my vision was fine and that the worst case senerio is that I have

an aneurism and that I should see a neurologist. Whoopi another

doctor! Luckily, I got into a WONDERFUL doctor. Before I even met him

he had me have full body MRI'S with and without contrast, EEG, vision

testing, and full blood workup. Later that day I met one of the men

that probably saved my life. I was trully intimadated by the 6

something large frame and gruff voice. He told me that my MRI's were

abnormal and he was seriously concerned why. I was then sent in for a

lumbar puncture that night. Of course there were some abnormal cells

but all of the testing for viruses, bacteria, and sorts were coming

back negative. That's when the word lymphoma was first brought

across. The nerves started up and I didn't know what to think. The

only thing that ran through my mind was my beautiful 6 month old at the

time, my family, and the fact that I'm 23 years old what the heck is

going on! I was in the hospital in my town for about three days.

Since I was on antibiotics and everything was coming back fine and my

eyes was going back to normal they decided that maybe a good rest at

home while they think about this would be good for me and it was.

Later that evening though I got a phone call from my Neurologist, Dr.

Dove, stating that he was extremely concerned that he wasn't going to

let this go and that we were going to do one more test a PET scan to

make sure it wasn't cancer. Apparently my MRI's showed severe

inflammation in my brain and spinal cord which was causing pressure on

my third cranial nerve which made my eye go wacko. Monday, morning

March 5th I had the PET scan and it showed no sign of cancer, but I was

having a new symptom, horrible sharp pain in my left arm. Dr. Dove

decided I needed more help than what he could give me so off to

Jewish Hospital in St. Louis I went. I was there for a month enduring

several tests to find out what was going on. In the process I had a

few lumbar punctures, emg, mri ct scans, blood work duh, nerve and

muscle biopsy, bone marrow biopsy, broncheal biopsy, and probably some

things I was too drugged up to remember. The final thing was on March

23 2007 I had a double brain biopsy to deteremine that I did have

neurosarcoidosis. The reason why they had to go to extremes was that

all of my other biopsies were coming back negative for sarc and they

couldn't take the chance that it was NS and treat it when it may have

been brain cancer. If it was brain cancer the prednisone that you give

to treat NS would have spread the cancer throughout my body and I would

have been dead in three months. After the surgery I was put in extreme

high dosages of prednisone. Dr. Clifford my neurologist at

(wonderful doctor too) wanted to be aggressive with my treatment

because it was advanced enough that we needed to. I was on 80mg a day

and have now tappered to 20mg daily with 15mg of methotraxdate once

weekly. As far as now only a little more than six months later, my

eyes in completely normal, my pain in my arm is gone, and I have made a

full recovery from the surgery. Yes there have been some side effects

to the medications I take but overall I'm an extremely blessed person.

I wanted to share my story for two reasons first one is self-ish in the

aspect that it's just nice to vent and let things out and the second is

to put another story out there that maybe someone can relate to and

know that you aren't alone because there groups like this one, my

loving family, all of the wonderful, kind doctors, nurses and medical

staff I know that I'm not alone in this.

Thank you for taking the time if you did. Please feel free to respond

anytime.