Medicinal Marijuana for NMO

Throughout my NMO journey I’ve tried to keep an open mind towards alternative medicines. I’ve had great success with naturopathic care, acupuncture and osteopathy so when many of my trusted friends suggested cannabis, or medicinal marijuana, I thought it worthwhile to look into it. Cannabis has a bad reputation; Many people think marijuana is for a bunch of hippies getting high and eating Cheetos. Others think getting a marijuana prescription is just for those making up mild conditions who want to get high. Whilst both might be true in our world there are some fantastic testimonials from real patients.

I’m not the type to role a joint and get high but throughout my research I discovered CBD oil, or Cannabidiol, which can be consumed with a few drops on food, in drinks or straight under the tongue.  You can even diffuse CBD oil but others in the room will also feel the effects. There are many strains that have low or no THC levels, which is the component that gives the feeling of being high. I was transparent with my family doctor that medicinal marijuana was something I was considering. He was honest that he didn’t have extensive experience nor could he prescribe it but he did refer me to a reputable clinic that did.

marijuana

I’m fortunate that a close friend happens to be a key sales rep for one of the major distributors of medicinal marijuana products in North America. He spent a lot of time understanding my symptoms and suggesting the best CBD oil products. Here are my take-aways of CBD oil:

  • It still stinks. If you dislike the skunky smell of marijuana you still won’t like the oil.
  • Marijuana strains are very different and have names like Indica, Sativa or Hybrid. ie. Some help with insomnia, pain management, fatigue and/or several different combinations.
  • Each production changes so although manufacturers try to keep the potency levels as close to the last run it’s never exact. Remember, marijuana is a plant.
  • Because of production changes, prescriptions suggest amounts but the patient will need to dose up or down for each new bottle.

I tried CBD oil for several days and I’ve made the decision it isn’t for me. I dosed up and then more (and then more) and could never get the same relieve prescription medication provides me. I struggled with the taste (it was not that noticeable but did have an aftertaste) and after a certain amount I did feel somewhat paranoid. The one positive about CBD oil was that it helped with my insomnia but my other needs were not met. I felt frustrated trying to convert the prescribed grams into millilitres and then into how many drops that translated into.

I think there’s a place for medicinal marijuana but we’re still in the infancy stage. Doctors don’t have enough historical data to understand how the drug might best help different diseases. I can certainly see how marijuana might one day be part of the treatment plan for NMO patients and I know many who already do. The marijuana drug industry is regulated (and legal in many countries and states) but it’s tough for governments to monitor it. Uneducated patients may purchase from small retailers instead of one of the larger manufacturers direct and might purchase marijuana that is unsafe (ie. With pesticides or cross contamination). If you do decide that medicinal marijuana is something you want to try spend the time researching and choose a reputable clinic, doctors and distributors.

Good mental health is critical to managing your physical health

I imagine I’m probably one of the worst patients to treat. I fully understand the advice I receive but I’m horrible at following them. We’ve all been told it; Stress can really affect how we handle existing and future problems arising from having neuromyelitis optica (NMO) and admittedly, I’m in the habit of taking on quite a lot.

stress

I love to work hard and I work to live well. The type who suffers from wanderlust, adventure and trying new things, I generally only operate at hyper speed. A couple of months ago I knew I was at yet another crossroad. Where previously I could manage daytime fatigue, the burning sensation and general pain, my body had started to feel sluggish, unresponsive and exhausted. I tried to sleep it off, eat well and rest but I couldn’t bounce back. I recently blogged about a flare as a result but still couldn’t feel better.  (more…)

8 years living with NMO

June 23rd marks my 8th year being diagnosed with NMO. It’s a bitter sweet day to reflect on as I remember how much my life changed within a week. I remember so clearly; I was working at my family’s hotel in Frisco and I was riding the elevator down to the lobby when all of a sudden I couldn’t control my left arm. I walked into my husband’s office since he was the general manager. He looked at me and asked what the heck is wrong with me and to stop waving my arm around. I said something is not right and I need to get to the hospital. Within hours I was diagnosed with Transverse Myelitis, which they thought would likely be my only attack. They suggested that I should be fine after my 5 days of steroids in the hospital.

Almost 1 month later I had another attack where this time my whole body started shaking uncontrollably and I started to go paralyzed on my left side. This time we drove down to Denver and I was admitted to the hospital for 5 days again for IV steroids. They did another MRI and they changed my diagnoses to relapsing remitting MS. I didn’t know what to think when they told me I had MS but I focused on finding a neurologist to start MS medication right away. What a whirl wind experience I had to find a doctor and to start educating myself about MS and all the different medications I had to take. At one point I was taking 15 different pills, which did not include my MS medication that I had to inject into myself everyday.

In August again 1 month after my second attack I started to go blind in my left eye and the doctors did not understand why I was having such horrible attacks since I was on MS medication. My neurologist was second guessing I had MS so I was admitted again to the hospital for 5 days of IV steroids. My doctor recommended I go to the Mayo Clinic and get a second opinion as he thought I had Neuromyelitis Optica. When my doctor told me that I might have NMO he looked at Eric and I and said I would have a better chance winning of the powerball then being diagnosed with NMO. Well within a month I went to the Mayo Clinic and the doctor there agreed I had NMO. Now my life was going to change even more they originally told me. I needed to start taking Rituxan right away and the doctors could not guarantee I would get my vision back in my left eye.

Looking back all I went through and how much my life changed after being diagnosed with NMO it’s been bitter sweet. At one point through my journey I thought I would never be able to have kids and I would never see out of my left eye and I would never recover being paralyzed on my left side. I beat all those things; I have two adorable children, my left eye I can see out of, and for my left side it’s just more weaker then my right. I am very thankful I have seen some wonderful doctors that helped my dream of having kids come true. I have also met some incredible people because of having NMO and I wouldn’t have met them if it wasn’t for NMO.

Help Take NMO to the Next Level: Complete This Clinical Trial Survey

I always reminisce about how the Guthy Jackson Charitable Foundation’s 2010 NMO Patient Day was the catalyst for the birth of NMO Diaries. That’s why I have a soft spot for GJCF and its mission to better the lives of those affected with Neuromyelitis Optica/NMO through advancement of therapies and search for a cure.

The latest project at GJCF is a clinical trial survey that will bring together people living with and blood-related to those with NMO into a pool of possible clinical trial candidates. Filling out the survey doesn’t automatically enroll you in a clinical trial; rather, it helps measure your knowledge of and willingness to participate in clinical trials.

I, myself, have enrolled in a few clinical trials before, and yes, it takes time and resources, but I participated because I have hope for the future generation that NMO can one day be a thing of the past, like polio! Whenever I have the time and qualifications, I make an effort to contribute whatever I can to better the lives of everyone affected by NMO, including myself.

Even if you aren’t sure, I encourage you to complete the GJCF clinical trial survey and be part of a movement to improve our lives.

Taking Charge of My Health

 

When I remember how I felt this time last year I can say that I have come a long way. I have gotten off a lot of medication, which has helped me lose over 45 pounds. Last October I came to the hard realization I was over medicating myself and on the wrong medication. After consulting with my doctors we decided to take me off Lyrica and try Gabapentin instead. A month later I lost 20 lbs! This motivated me to lose   more weight so I evaluated my diet and acknowledged that I wasn’t getting enough exercise.

 

Over the last 2 years at the Guthy-Jackson Patient Day for neuromyelitis optica I listened to Elizabeth Yarnell’s talk on nutrition and if certain foods were contributing to our poor health. I finally decided to call her and see what she had to offer since losing weight was important for me and for my family. The first step was a parasite cleanse that lasted 20 days. It was very simple and easy to do. Next, Elizabeth had me draw blood to determine what foods made me more inflamed. Then we tested my urine for 24 hours to see how I digested food. After a week waiting for the results Elizabeth called me for a 2 hour phone conversation explaining my results and a plan.

I couldn’t believe what I learned! I was eating so many wrong foods that were making me more inflamed. For 2 weeks I was on a strict diet and could hardly eat anything. That was tough. But after that we started introducing certain foods again. I’m 4 months into the program and I’ve lost another 25 lbs. Elizabeth has totally opened my eyes about what I should be eating. All of my family and friends keep telling me that they can’t believe how healthy I look. They say I am glowing, they can’t believe how much weight I have lost and that I don’t have that bloated look anymore.

 

I am also working a personal trainer at the gym 2-3 times a week and I do Pilates twice a week. I am 23 lbs away from my goal weight, which was where I was before I was pregnant with Allen. My goal is to lose the last 23 pounds by June 25. My ultimate goal is get back down to my college weight in the next year or so. Between Elizabeth and my personal trainer I think I can do this.

 

Thoughts on winning MasterChef USA 2012

Care to know how Christine is feeling after her big win? Check out her new blog post at:

http://www.theblindcook.com/thoughts-on-winning-masterchef-usa-2012/#idc-container

Toronto Blue Jays Home Opener

Living with NMO (Neuromyelitis Optica), it’s easy to get wrapped up with important doctor appointments, medication and managing symptoms that sometimes I forget to make time to enjoy life.  I wrote a list of all the things I used to enjoy (before NMO) and I’m making every effort to GO OUTSIDE!  So, I bought a few tickets to the Toronto Blue Jays Baseball home opener, gathered  a few friends and had a good time.  I even broke a few of my rules (a couple of drinks, potato chips and I stayed up late) and it was totally worth it.

Oh, and feel free to make fun of my singing.

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10
Apr 2011
POSTED BY Jenna
POSTED IN

Just for fun

DISCUSSION 2 Comments

Tummy Issues

Here is an update on how I am feeling with being on Prednisone (to keep my Neuromyelitis Optica at rest) and some of the issues I am dealing with. Stay tuned there will be an update after my tests…

04
Apr 2011
POSTED BY Erin
POSTED IN

The body shop

DISCUSSION 2 Comments

IV steroids

I documented  the fun of receiving IV steroids, which all of us with NMO (Neuromyelitis Optica) have had to endure.   I wanted to show everyone what I go through to get this ‘lovely’ process done but also to show my family and friends all the fun I have sitting there for about an hour.  Eric brings me food and kinda sorta entertains me:)

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28
Mar 2011
POSTED BY Erin
POSTED IN

The body shop

DISCUSSION 1 Comment