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!! 

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. 

  

  

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.

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. 

 

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 insulin

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. 

This weekend couldn't have been better...

My girls are here this weekend and I'm thankful for that. I needed something to get my mind off of things. Like I said, I'm thinking of the worst case scenarios when it comes to MS. Seizures. Paralysis. Pain. I don't want it. My family has been sending me nutritional guides/links, etc Everyone's praying for me. I'm kinda trying to keep things under wraps so to speak, until I know more. The weekend is yours! enjoy it!

And so I cried...

I keep saying there's nothing worse than this or that but today, I feel pretty bad! Not physically, although I am numb but mentally. Multiple Sclerosis is nothing to be played with and I've been diagnosed with it. Pretty scary because I'm immediately thinking of the worst case scenario. I won't know anything for sure until I see the Neurologist but it's still a pretty 'scary' thought. I thought I could handle being at work today but when I got there, the more I thought about it, the more I wanted to cry. So I shut my office door. My family knows the diagnosis. My close friends know. My coworkers know. Now it's just the wait game.

Today, my manager knocked on my office door, came in and asked if he could give me a hug?! He made me cry. I made him cry. He told me to stay strong and stay in my faith. And that "IT" picked the wrong one. And we're going to get through this. they've got my back.  My dad liked that because he said he was just about to send me a "virtual hug" but God sent one of his angels! My auntie said "Natasha's going to be alright. It's Gods way of getting someone else's attention"While it didn't make me stop crying, it was another reassurance that I've got a support group like no other and yes we ARE going to get through this. But I'm still going to cry LOL.

My family and friends sent me lots of information to get ready for my appointment: http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/basics/preparing-for-your-appointment/con-20026689 because I honestly don't know what questions to ask. What I KNOW about Multiple Scleoris, in it's simplest form is, "In multiple sclerosis, damage to the myelin in the central nervous system (CNS) — and to the nerve fibers themselves — interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body." To most people that would mean just that. To me, it means A LOT more. In 2011 I was diagnosed with Bells Palsy as most of you know. If you don't know, you can check out my blog here. So now my mind is racing because I'm trying to figure out if and how all of this is related. Not to mention, guess who's had a history of migraines? *points to self* this girl!

But that's enough about that because mentally, I don't want to think about it anymore. My doctor's appointment has been scheduled for next Tuesday.