Thursday, October 9, 2014

I Like This Place

I've dealt with neurological 'issues' since I was a teen. I've had multiple Neurologist, from Tallahassee to Baton Rouge and now to New Jersey. Now I have the pleasure of visiting the Multiple Sclerosis Center at the Centra State Hospital. I think i'm going to like it here. My neurologist is Dr. Amos Katz. 

We do physical tests like walking, hand/eye coordination, strength checks. Good things to track to see if i'm getting better or worse. 


Tuesday, July 8, 2014

Disease Modifying Drugs

I'm beginning my new Multiple Sclerosis medication, Gilenya. My drug of choice. It's a daily pill that i'll have to take (til forever). I opted to take this one instead of giving my shot, regularly. 

Gilenya® is a new class of medication called a sphingosine 1-phosphate receptor modulator, which is thought to act by retaining certain white blood cells (lymphocytes) in the lymph nodes, thereby preventing those cells from crossing the blood-brain barrier into the central nervous system (CNS). Preventing the entry of these cells into the CNS reduces inflammatory damage to nerve cells.
Gilenya was approved by the U.S. Food and Drug Administration (FDA) for treatment of relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, in patients 10 years of age and older.


The first time I take it, I had to be observed for 6-8 hours to ensure my heart rate handles the medication. Here's to a new start!! 

Monday, June 23, 2014

Must Check My Eyes

As a part of taking the Gilenya, I'm required to get my eyes checked, regularly. Some say, the Gileyna can cause Macular Degeneration. So while in New Jersey, I started going to Matossian Eye Associates. They have a Gilenya protocol 'cheat sheet' that they use to make sure we've done all of the checks. Eyes dilated. BRIGHT lights shining through. Looking at the back of my eyes. 

  

  




Saturday, May 3, 2014

Going going, back back to...the hometel

They told me I get to go home today. Super excited. I'll admit, I enjoyed the food and being able to 'rest' with the exception of the every 4 hour finger prick. For the most part, it wasn't bad. When I had to potty I had to let them know immediately so that someone could come help me. Having my mom here has been nice. She went to the hotel each night and came back each morning.

I'll have a Neurologist that I'll need to see on a regular basis.  Things are about to get moving.

Wednesday, April 30, 2014

First full day in the hospital

Yes, when I got here, I didn't know what to expect. I've never had to stay in the hospital over night. I've spent some hours here (there) for test, etc but that's about it. It's not too shabby. The food is good. They're pumping me full of meds and pricking my poor wittle fingers every 4 hours. I do NOT like that.



  • 730 checking vitals etc. BP good. Heart rate kinda down (60 is normal. It goes down to 50 lingering at 56 now). 
  • Temperature is down some.checking again in a few (94)
  • Results from MRI should be available when rounds are made by the doctor at 9. 
  • Blood work should come out within the day   
  • Next dosage of 1000mg steroids (solumedral) is at 1.
My mom's still here and it's great having her here. My coworkers have been awesome too! 


As much s I like being here, i'm ready to go! LOL... They have me on LOCKDOWN. I'm in the Neurolody/Stroke unit and EVERYONE is at risk.

My friends and family have all been super supportive. Everyone is rooting for me. 
 




Tuesday, April 29, 2014

Nobody leave here without singing the blues...

That's sort of how I felt at the doctor's office. The neurologist came in, we talked a little bit about my symptoms, my history and he told me what he's seen on my report. After leaving the office for minute he came back and said "I'm admitting you to the hospital". We need to get some MRIs and bloodwork done and we need to start you on a high dosage of steroids. I kid you not, I was not at that appointment long before I was being admitted. He works fast! And well, here I am.

They want to do a few tests, checking for 'fake' MS like Lime Disease and Sarcodosis so I'm doing bloodwork for that. They are doing an MRI of my Brain and Spine. My coworkers came to sit with me for a few hours. The nurses joked that I had 4 nice looking men (suits) in my room. Too bad I missed them. I was downstairs having my MRI.

Dr appointment at 1215  
Admitted at 2  
Started 1000mg of steroids (solumedrol?)  
Insulin check at4pm (every 4 hours) 
Mri at 7 - 930 (back in room 950)  
Stool softener and pepcid after mri  LOL
Blood clot shot  
Sugar check at 1156pm  6cc of insulin after check  
Blood work 350am (every 24 hours)  Sugar 156. 2cc insuli
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So there's a potential that we'll need to a spinal tap. That never sits well with my family. So, my mama is on her way up here. My coworkers gonna go get her from the airport.