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Judith: Myasthenia Gravis

RxLeaf

Cannabis has changed my life for the better; I don’t feel like I’m dying anymore from the pain of Myasthenia Gravis.

Editor’s Note: Any testimonials or endorsements found on this site are for anecdotal purposes only. The information in Rxleaf testimonials is not intended as direct medical advice, nor should it be relied upon as a substitute for consultations with qualified healthcare professionals who are intimately knowledgeable about your individual medical needs.

 

My name is Judith and I was a RN for many years with a specialty in Critical Care. I was a huge advocate for preemptively treating pain symptoms in my very sick patients. So, it seemed so ironic that when I became sick with a rare neuromuscular degenerative autoimmune disease, Myasthenia Gravis, my doctors were reluctant to prescribe meds to treat the pain.

The disease causes severe muscle spasm. It interrupts normal muscle actions all over the body: bowels, swallowing, vision, and especially breathing. I understood that narcotic pain meds could decrease my ability to breathe, so I went along with alternative therapies trying acupuncture, guided visualization, meditation, TENS treatment, physical therapy.

Then as a result of general weakness, I fell and fractured C6 in my neck. That required multiple surgeries to fix and left me with nerve damage in my neck, right brachial plexus, and right arm. Both nerve and muscular skeletal pain made my life horrible for years. My life fell apart, including my long term marriage, and I just got sicker.

“My Life Fell Apart and I Just Got Sicker”

Myasthenia Gravis Xray Showing Neck Fracture

The disease was out of control so my son had me move in with him, and I started seeing a specialist at University of Maryland. I started a treatment that involved total immunosuppression. In the 3 years I’ve been in treatment, I’ve received IVIG infusions over 2 days monthly. That required having a port implanted for the infusions. Because of the immunosuppressants, the port became infected and had to be replaced twice…the last time was life threatening causing sepsis. I spent a week on the ventilator in Shock Trauma then another month in hospital recovering from it.

Myasthenia Gravis Woman patient Getting Intravenous Treatment

Almost 2 years ago, I lost the ability to swallow safely. Further, my gut quit working (gastroparesis), so a double lumen feeding tube was placed into my stomach. I went into a wheelchair 3-years ago when the large muscles of my legs stopped working. Eventually I went into the pain treatment program at Johns Hopkins. The disease and the immune suppressants limited my pain treatment options, but they tried to get me reasonably comfortable.

Last year I went to the hospital for pneumonia 3 times. I also had a jaw abscess, a GI bleed, flu with intractable vomiting, and sepsis. When I collapsed on Christmas Eve last year with sepsis, my doctor decided he would no longer treat me for pain because he was fearful that I would have respiratory arrest. That sent my son and me scrambling to find pain management.

Myasthenia Gravis could be helped by Medical Cannabis in Prescription Bottle

Pain Specialist Recommends Moving to Legal State

The pain specialist at UofMD actually told me to move to DC because medical cannabis is legal there and she felt it would be safest for me. I found a doctor here and started Marinol for pain and nausea as well as CBD oil and herbal salves for the muscle spasm.
I saw almost immediate effect from the Marinol – to the good. So my son set out to research what I should be taking. We ended up going to Amsterdam for 2 weeks to sample different varieties of Cannabis and CBD, CBG, CBN oils.

Myasthenia Gravis help was found at this Amsterdam Night Coffee and Smoke Shop

Within days of starting the CBD oils while back in the US, I was able to swallow safely and saw better gastric motility. I was able to swallow edibles. I found that smoking a couple puffs of an Indica blend twice a day managed my pain, helped my stomach digest again, allowed me to see enough to read, and helped eliminate the spasms in my muscles and digestive system.

Smoking works much better than edibles…probably because I absorb food erratically. I continue with the Marinol and herbal salves and CBD oil …but look forward to being able to vape or smoke when it’s available.

From RxLeaf: Cannabis and Myasthenia Gravis

These results are a cause for celebration, but they’re not surprising. Myasthenia Gravis comes from a negative feedback loop between the brain and the muscles. And cannabis therapy has been shown to be extremely effective in managing that relationship.

Cannabinoids help regulate neural communication pathways and can strengthen the body’s control over neuromuscular junctions, a fancy term for what we commonly refer to as the mind-body connection. Essentially, Myasthenia Gravis weakens the body’s ability to control muscles. Cannabis not only treats the pain that accompanies the muscle spasms that bubble up because of this disease, it also helps the body gain control over them.

Myasthenia Gravis patients all over have been sharing their stories of triumph over the disease after using cannabis. And most follow a familiar pattern. First the disease hits. they get weaker and worse, and then they move to a state with better medical cannabis laws. Suddenly, their lives are whole again. The tide of the disease’s progression begins to turn.

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2 Comments
  • Avatar
    Penny G

    Check you spelling it would improve your credibility.

    May 4, 2019 at 1:03 am Reply
    • Jennifer Grant

      This is a post from a patient. I will go through and check their spelling for them. Check your kindness, it will improve your life.

      May 5, 2019 at 9:14 am Reply

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