Love it or hate it, marijuana gets a bad rap. For those who have legal access, it can be a life-changer. For Amy Gurowitz, diagnosed with multiple sclerosis (MS) 30 years ago, medical marijuana (MMJ) has helped her get back on her feet. She shared with HealthCentral via email how a little over a year working with medical marijuana treatment has helped her MS.
HealthCentral: How has your MS evolved since diagnosis?
Amy Gurowitz: In the beginning, my symptoms were numbness, tingling, fatigue, bladder incontinence and bladder retention, foot drop, and difficulty walking. I started falling from the foot drop and became increasingly reliant on my cane. Lack of balance and coordination, spasticity, pain, electric shooting sensations, as well as anxiety and depression, were on the daily menu. When I wanted to do things that required extensive walking, I began to use a scooter.
HC: What has become your greatest challenge or fear?
Amy: Over the last seven years, I became really frightened of what my future held and what I wouldn’t be able to do. On bad days my muscles were so weak that I couldn’t stand for more than five minutes nor could I get up from a seated position. Increased pain and spasticity were mixed with anxiety and depression. I was losing hope.
HC: When did you first consider MMJ?
Amy: I had begun to consider a Baclofen pump — a hockey-puck-size device surgically implanted in my abdomen — because I was so stiff and spastic. I knew that the procedure would help; but when I started researching the details, I decided the benefits weren’t worth the risk. This is when I started to seriously consider MMJ, which has been legal in New Jersey for some time, however I knew it was really hard to get an ID card and could be really expensive.
HC: What hoops did you have to navigate to gain access to MMJ?
Amy: The legal and financial hoops I had to jump through were high. When I determined how much it would cost, I started a GoFundMe account to raise the money I needed to give it a try. To get a license, I was required to see the state-registered medical marijuana doctor four times at a total cost of $500. Then I had to register with the state before I could contact a dispensary to find out how much the MMJ would cost. I still have to pay $100 every three months to renew the prescription. Cash only!
All of this had to happen while I still had no idea whether or not the MMJ would even help me. It was a lot of elbow grease and required a lot of cash, but I finally had hope.
HC: Do you have choices as to where you can obtain MMJ?
Amy: This varies greatly from state to state. Currently, there are only six state-licensed medical marijuana dispensaries in New Jersey and most of them are in central and south Jersey. I’m lucky to live near a dispensary, but it happens to be the least accessible and most expensive with the fewest product options. I went to five of the six dispensaries to explore their different offerings. It was all quite overwhelming — beyond overwhelming really — for the first few months. There was so much to learn and clearly a lot that would be trial-and-error.
HC: How did you decide what to try? Were there any resources that helped you to navigate the myriad options?
Amy: The MMJ doctor I went to knew very little about available products and his nurse only provided a list of dispensaries with some “reviews” from other patients. I tried my local dispensary but the people there were marginally more helpful than the doctor — not telling me anything I didn’t already know from my online research, and (the) variety of strains they had in stock were limited. Since they only sell the bud of the plant, I had to learn how to “process” the weed into something I could reasonably use, which was hard. I discovered that other dispensaries in the state offer more in terms of product, sales, and informed staff to help educate the consumer.
HC: Have you needed to purchase special equipment to use MMJ?
Amy: I had to buy a grinder to process the bud and a Magical Butter machine to make butter oils and tinctures. Both of these I got off Amazon. I bought a Pax3 vape with all the accessories to use and clean it. For this I went to a local shop … since I had a lot to learn and relied on the knowledgeable staff to help guide me.
HC: What differences have you seen in your MS since you started using MMJ?
Amy: MMJ treats my MS symptoms and its effect is immediate. That’s the thing that makes it so incredible. If I’m unable to stand up, I vape and then I can stand. When I’m stiff and in full-on Frankenstein monster-walk mode, I vape and the spasticity relaxes and the pain goes away. This effect is almost unheard of with MS and traditional MS medications. What is variable, however, is how much the MMJ helps and how long the relief lasts.
HC: Do you adjust how much MMJ you use on a daily basis? If so, how do you decide what you need?
Amy: I’ve come to learn that using a tincture at night and vaping during the day works best for me. The edible stays in my system for a very long time and I wake up the next morning feeling much more able. The strain I use at night is high in THC (Tetrahydrocannabinol), which helps me sleep. The vaping is like a “take-as-needed” medication. It’s also short-lived and needs to be repeated. I use very high CBD (cannabidiol) strains and by vaping a little at a time, I get positive effects and don’t get high.
HC: Have you experienced any unusual or unexpected side effects of MMJ?
Amy: Once I figured out how not to get high, I had no unwanted side effects. It’s been incredible how many things it has helped with. I had other pains that are relieved by it and even my premenopausal symptoms went away. Amazing, right?
My daughter is 16 and she totally understands why I’m using it. She’s seen the results firsthand. On one of the first nights I tried an edible, I got so incredibly high I couldn’t stop laughing. With edibles, the effect comes on slowly and is very intense. My daughter was at soccer and it only got stronger when she came home. I was cracking up so hard that I went into my room and told her that no child should see their mother this way: Laughing to tears. It was nuts. I’ve since figured out how to dose so that doesn’t happen.
HC: Granted that each person’s experience is unique, what strains of MMJ have you found to be most helpful?
Amy: The high CBD strains are the most effective for me and carry less risk for getting high since THC is the psychotropic ingredient of cannabis. Some of the strains I use are AC/DC, Hayley’s Hope, and JLL (which stands for Juanita La Lagrimosa). Leafly.com is a great resource for strain types and breakdowns. It also has reported experiences that describe the types or symptoms each strain helps with.
HC: If a person with MS is living in a state where MMJ is legal and is interested in trying it, what do you suggest are the first things they should consider before approaching their doctor about it?
Amy: I think there are some doctors that support it, and some that don’t. Finding out your doctor’s approach is helpful. The medical community’s understanding of how MMJ benefits people with MS is evolving, and I think it will ultimately be a very normal option for those who want to try using it as a treatment.
You can find more about Amy’s experiences with MMJ and MS on Facebook at Amy’s Medical Marijuana Moments.
See more helpful articles:
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.