RE: New to the group and Neurosarcoidosis

[Guest guest]

Hi, Mommy! (I didn't know your name, but I know you're a mommy!) Welcome to the NS family. This is a heckuva way to widen your circle of friends, but we are glad you found us. It sounds like you are truly blessed to have doctors, from the E.R. on, that took your symptoms seriously. Not all do, unfortunately.

Thank you for sharing your experiences. It must have been a frightening time for you and your family. I'm assuming the brain biopsies were positive for sarcoidosis? I'm glad to see that your neuro has put you on MTX along with the Prednisone. There are still so many who just use the Pred, not realizing that complications like this require combination therapy.

Have you been able to return to work? I appreciate your interest in giving inspiration & hope to others. We are here for both the victories & the challenges, but it sure is nice to hear some good news! It sounds like your doctors are on the ball & will keep a close eye on you, to make sure that the sarc monster (as we call it) doesn't make another sneak attack. Be sure to see an opthamologist (MD, not an optometrist) for frequent eye exams, as sarc loves to attack the eyes. From what you said, I'm not too sure about the guy you saw. You might want to ask your neurologist for a recommendation.

As you said, this is a great place to vent, complain, etc. Many of us find that our families don't always understand what we're going through. Even though they love us, it's difficult to really know unless you've gone through it. So don't ever hesitate to share any concerns, issues, questions, etc. you have. We do have several moderators who are very sick right now, so don't be upset if it's a day or two before someone gets back to you. Other group members will also respond if they are able.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now!

[Guest guest]

Hi, Mommy! (I didn't know your name, but I know you're a mommy!) Welcome to the NS family. This is a heckuva way to widen your circle of friends, but we are glad you found us. It sounds like you are truly blessed to have doctors, from the E.R. on, that took your symptoms seriously. Not all do, unfortunately.

Thank you for sharing your experiences. It must have been a frightening time for you and your family. I'm assuming the brain biopsies were positive for sarcoidosis? I'm glad to see that your neuro has put you on MTX along with the Prednisone. There are still so many who just use the Pred, not realizing that complications like this require combination therapy.

Have you been able to return to work? I appreciate your interest in giving inspiration & hope to others. We are here for both the victories & the challenges, but it sure is nice to hear some good news! It sounds like your doctors are on the ball & will keep a close eye on you, to make sure that the sarc monster (as we call it) doesn't make another sneak attack. Be sure to see an opthamologist (MD, not an optometrist) for frequent eye exams, as sarc loves to attack the eyes. From what you said, I'm not too sure about the guy you saw. You might want to ask your neurologist for a recommendation.

As you said, this is a great place to vent, complain, etc. Many of us find that our families don't always understand what we're going through. Even though they love us, it's difficult to really know unless you've gone through it. So don't ever hesitate to share any concerns, issues, questions, etc. you have. We do have several moderators who are very sick right now, so don't be upset if it's a day or two before someone gets back to you. Other group members will also respond if they are able.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now!

[Guest guest]

srccroft,

You didn't sign a name so I have to just call you srcccroft. I am sorry

that you are going through all of this but I am glad that you were able

to get a diagnosis. Looking back now, do you see that you had any other

weird symptoms prior to your weird adventure? Just curious.

Thanks for sharing your story.

Terri G.

>

> 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.

>