Setbacks and Fresh Starts | Summer of 2016
What on Earth is going on with Fiona?
As you may remember, in December of 2015 I came off of Tysabri which I was using as treatment for Multiple Sclerosis. I had been supplementing daily with a particular Cannabis Oil (Full leaf cannabis extract, AKA Phoenix Tears) for 6 months before coming off of Tysabri. All of my MRIs were stable pre and post termination of Tysabri, and I felt absolutely-on-top-of-the-world between late December 2015 and June of 2016. Until I made the stupid decision to stop taking my Cannabis Oil in late June. My neurologist didn't think it was doing anything, and I was convinced that I was "In the clear". I didn't think I had to worry about the disease process anymore. I was wrong here.
Inflammation returned abruptly, and within a month my brain developed 4 new lesions which caused me to start having seizure-like episodes. I did not have any reaction or negative side effects from withdrawal of Tysabri this time around, and was told that it would be fully out of my system within 3-4 months (by March/April at the latest). My MRI in April (4 months after last dose of Tysabri) showed NO lesions! The only thing that changed between April and July was the cessation of Cannabis Oil. My neurologist will not acknowledge the timeline of stopping my use of Cannabis Oil and the development of the lesions, but it is too obvious for me to ignore the fact that THC and CBDs calm the immune system and reduce inflammation systemically.
Here is where I will share the timeline of my experience with going through a hospital stay and deciding on a new treatment.
1:30pm Admitted into the hospital - Please think happy brain health thoughts for me! I have had 4 episodes now in 2 weeks that are like a cross between a seizure and an acute MS flare up. I lose control of the right side of my body, my face droops, and my limbs involuntarily contract very painfully. It lasts up to 2 minutes of contracting/seizing and then releases, and I go entirely back to normal both physically and cognitively. I don't black out and am fully awake each time. I haven't had any episodes with my MS since 2010, and they still aren't sure it has anything to do with MS. The ER doctors are baffled. Currently in VGH ER. I am currently fine, just overwhelmed and tired of dealing with this stuff. I can't handwrite well and don't have another outlet for this so I will keep updates here.
11:45pm - ER neurologist ordered an MRI and EEG and I am staying overnight to be seen by my regular neurologist in the morning. Exhausted and hungry. Glad I have my boyfriend with me.
12:50am (Okay, technically July 18th at this point)- I was admitted and shuffled to a private room, with a view of the nearly full moon which is kind of nice. Time to get some sleep before being poked and prodded more tomorrow bright and early.
10:28am - I woke up bright and early to watch the sun rise and started my morning off with being dragged to the basement for an EEG. Just saw my neurologist now who has determined that I am having "MS tonic seizures". It is unknown what causes these seizures and I am still waiting for an MRI. The neurologist says these seizures can happen when old lesions become inflamed for whatever reason, and she anticipates starting me today on a very low dose anti-epileptic med to control these episodes.
10:45am - The physiotherapist (PT) came to see me and checked my strength and reflexes, and she hopes to refer me to outpatient PT to support me in gaining better nerve response time in my right arm which has mild deficits.
PS. Nathan is the best there is. He delivered me fresh hot home-cooked bacon in the hospital because he knew how hard of a time I would have with the hospital food.
Bored as eff. I have goop in my hair from electrodes and need a shower b-b-b-baaad. Started on anti convulsive meds and trying to do some new life planning... Unfortunately I will have to change up some of my work ASAP. Good thing I am killer resourceful! .
Hoping I can go home today. No word on how long of a wait it will be for my MRI.
~1:30pm - Hour long MRI done, waiting for results. Note to self: either take the Ativan, or don't fall asleep in MRIs. Falling asleep during an MRI is a scary thing if you're a little disoriented, because waking up secured to a table, inside a small space, with a cage above your face and a blindfold covering your eyes, is NOT settling. Still waiting.......
6:54pm - Damnit, they are delaying things big time. I do not need a bed/private room and would be better off at home, but they are making me stay to wait around all night for MRI results and more tests I guess. Wishing anyone would tell me what the plan is, and wishing the clerical support staff wasn't brushing their foul mood off on me.
A little nervous about starting a new twice-a-day med, as I already have too much to juggle on my plate, and know anti-epileptic meds need to be adhered to carefully to prevent further seizures.
July 19th (Happy Birthday, Dad!)
8:20am - The neurology team is beginning their rounds now, so I should see them within the next few hours. My neurologist is working with a team of medical students which I believe is good, as their observations are not clouded with experience and they often have fresh new perspectives to offer. I have 2 great nurses today and am feeling fine, and would actually say my right hand/arm nerve pain has reduced (yay!). I don't think it's from resting because I have only had 8-9 hrs of sleep between the past 2 nights, so perhaps the medication is already helping. 😊
9:28am - Saw someone from the neurology team and they said my EEG is totally normal, and they are waiting for my MRI results to go over with me. They hope to have me home today, but said it could be another day wait still.
~11:00am - Unfortunately I have developed 4 new lesions in my brain, with one located in my brain stem. This isn't what any of us expected, and I am going to have to start another new MS drug and change my life up quite a bit again.
Realistic Fiona is very sad and feeling a little helpless because this means saying goodbye to my boat work and likely my nursing work, which are where most of my income is generated.
Positive/Proactive Fiona is just trying to make a new plan, and trying to remember that I HAVE healed brain lesions before and I CAN do it again.
Here's to new beginnings...
At this time I am trying to bounce back to feeling good after my body basically had an internal electrical fire. Right now I am also faced with tough decisions around medications, and I am trying to de-stress and keep as active as I can through it all. I will figure it out and I will get through this, and I will heal these lesions again.
Today I'm heading to the hospital for a ton of testing I have to do before starting my new medication. I settled on a medication called Gilenya, so long as I can get compassionate coverage for it. This medication will suppress my immune system and I will have to be extra diligent about taking care of myself (eating well, hiding from sick people, etc.). I chose this med as it was the only option I have with reversible side effects. It is a pill which saves me from monthly 2.5 hr IV infusions, and instead I will have to go for regular blood work. Fair trade though, I'd say. I feel like I am on the up swing!
Today is my first day on Gilenya, so it is observation day. I have electrical nipples (electrodes) all over me, and get the exhilarating task of checking my vitals every 30 mins until 5pm. All for this little yellow pill...
At 8:15am I signed in at reception and went through a ton of questioning about my health history, and an ECG, before having a witnessed dose of this med.
So far my relevant vitals are as follows
Blood Pressure (BP): 126/78 Heart Rate (HR): 69bpm
ECG Results: Sinus bradycardia with sinus arrythmia
9:30am - 132/92 BP 60HR
10:00am - 116/83 BP 64PR
10:30am - 109/73 BP 65 PR
11:00am - 110/80 BP 62 PR
11:30am - 108/81 BP 70 PR
12:00pm - 109/78 BP 71 PR
12:30pm - 109/77 BP 59 PR
1:00pm - 116/76 BP 64 PR
1:30pm - 126/86 BP 60 PR
2:00pm - 111/69 BP 67 PR
2:30pm - 115/75 BP 63 PR
3:00pm - 129/82 BP 69 PR
3:02pm - 115/79 BP 69 PR
(2nd set done for 3pm reading as I was laughing during first set)
3:30pm - 116/77 BP 60 PR
ECG Results at the end of the day:
I had to walk/jog on the spot, and jump up and down, to ensure my heart was excitable when my pulse dropped to 57 bpm, but normal otherwise!
I am feeling fine physically right now, but completely mentally and emotionally drained, which is exhausting in itself. Today I went in to my appointment knowing that I was being observed for heart block, and that it was common for patients' pulses to drop to ~30-38, as my nurse explained to me. I was definitely scared, but tried to just stay in the moment and not worry. Overall my experience with the staff at the ProHealth clinic was great. It is now 7:30 pm and my heart rate is 64 (yay!).