Living with Multiple Sclerosis: Deanna’s story
Photo by Matt Dayak
March is Multiple Sclerosis Awareness Month. The latest research reveals that nearly 1 million people are living with MS in the U.S. In Pennsylvania, MS is one of 21 conditions that qualifies patients for medical marijuana.
The National Multiple Sclerosis Society “supports the rights of people with MS to work with their MS health care providers to access marijuana for medical purposes in accordance with legal regulations in those states where such use has been approved. In addition, the Society supports advancing research to better understand the benefits and potential risks of marijuana and its derivatives as a treatment for MS.”
Multiple Sclerosis (MS) is an immune-mediated disease where the immune system mistakenly perceives myelin, which is the protective sheath around nerve fibers in the central nervous system, as an intruder and attacks it. Overtime, repeated episodes of this inflammation cause scar tissue to develop around the nerve cells, which results in slower, or blocked, nerve functioning. Human functions and processes such as vision, speech, walking, writing, and memory, can all be impacted by this breakdown, though symptoms manifest differently from patient to patient.
In recognition of MS Awareness Month, we are honored to support the work of our local chapter of the National MS Society, and to help raise awareness by highlighting one of our own team members. Deanna was diagnosed with MS in 2016, and has bravely shared her story with us below.
Tell us about how you got from diagnosis to becoming a patient in the PA program:
“I actually had never consumed cannabis before I got this diagnosis. But as soon as I heard Pennsylvania was legalizing a medical program, I registered, because I wanted to be sure to try every possible thing that was available to help me. Cannabis is part of a larger, holistic plan for me which includes Tecfidera, which is an immune modulator, as well as meditation, diet, and sleep.
The thing about MS is most of the traditional pharmaceuticals that are available in the US are immune modulators, but there really aren’t a ton of treatment options for symptom management. There are some pharmaceuticals like Sativex that have been approved in other countries, but from what I’ve found, medical marijuana is one of the best options for symptom management available in the US right now.”
What’s working for you so far?
“I’m still on my cannabis learning journey figuring out which strains are best for me. I started out with Indica strains but have actually found that Sativas seem to work better for me, especially for my depression.
I’ve found that I like vape cartridges the best. Because of my spasticity issues, titrating with tinctures just didn’t work well for me. I like Raspberry Cough as a general once a day vape in the morning to help me get going. I also like the Strawberry Fields and Mowie Wowie cartridges. I haven’t tried Harlequin yet, but it’s a big one in the MS community.”
It’s great to hear medical marijuana is working for you. What makes you want to recommend it to others living with MS?
“I love the control and flexibility I have with medical marijuana, because MS is one of those diseases that really varies in terms of how it affects people. It’s nice to have a remedy where I can control the strains I try and dosages I administer, because there is no predictability of which symptoms will face me at different times.
This disease is just so unpredictable. You never know when an exacerbation will happen. You never know what days you may be challenged with mobility, or have these random cognitive issues where you can’t think clearly. The cognitive issues can be horrible - sometimes I just can’t find the right words to use in a totally basic conversation.
Just as everyone’s MS experience is unique, so is medicating with medical marijuana. There are so many strains that affect all of us differently.”
What’s been your biggest win since starting medical marijuana?
“The most significant thing for me has been being able to wean completely off of Zoloft, the SSRI I was on for my depression. Depression is one of the most common symptoms affecting MS patients. Some studies show that it’s even more frequent among people with MS than it is in the general population or with many other chronic illnesses.”
I know you’re an avid researcher. What’s struck you most the more you read about MS?
“There are so many interesting things. For many years, research showed that a lot of the people diagnosed with MS are middle aged, Caucasian women. But more recent research indicates there are possibly up to twice as many people in the US living with MS than previous studies indicated. So, the demographics of who is affected by the disease may be more diverse than previously believed.
What’s also interesting is a lot of people who have MS live in more northern latitudes, so there is some belief in the research community that environmental factors could be a contributing factor to root cause. Because of this, a lot of us in the MS community regularly take Vitamin D. Pittsburgh is actually a hot spot for MS, and considering how little sunlight we see here compared to other US cities, it’s another thing that, to me, points towards there being environmental influences on the disease.”
What’s been your biggest challenge since being diagnosed?
“The unknown is the worst part. It’s scary to think that I don’t know what the future of this disease is, that I don’t know what my future holds. I don’t know if I will develop worse cognitive or physical challenges. There is no natural progression with MS that researchers have identified.
The other thing is that MS is considered an invisible illness. Sometimes when I’m out in public dealing with day-to-day stuff, I wish I could just tell the person at the grocery store or wherever I am that I’m struggling because of this disease. It’s a reminder to treat others with kindness because you have no idea what they are privately dealing with in their lives.”
Is there anything you want to add?
“If there is one thing I’d say in closing, it’s just that we are so fortunate in Pennsylvania to have a medical marijuana program and access to this medicine. It’s helping so many of us dealing with this disease and many others.”
Lastly, a word from our Pharmacist:
“There’s a large body of international research and anecdotal reports coming from the clinical trials that were done on Sativex that informed Maitri’s development of a customized dosing and titration regimen specific to patients with MS,” said Terri Kroh, Maitri’s Director of Pharmacy.
Further reading and research on multiple sclerosis and marijuana
● A 2012 study by the MUSEC group demonstrated the superiority of cannabis extract over placebo in the treatment of muscle stiffness in MS. Adverse events in participants treated with CE were consistent with the known side effects of cannabinoids. No new safety concerns were observed.
● A 2018 study concluded that THC:CBD oromucosal spray provided better and clinically relevant improvement of resistant MS spasticity compared with adjusting first-line antispasticity medication alone.
● The National MS Society prepared this 2017 Cannabis summary which includes additional research and key points relevant to MS and cannabis