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I have a diagnosis of Myasthenia Gravis BUT it does not control my LIFE
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On September 23, 2014, I left my neurologist speechless and it felt good! Two months prior my symptoms from myasthenia gravis had me battling extreme fatigue, difficulty breathing, slurred speech, droopy eyes, double vision, full body muscle weakness, and elevated liver enzymes from taking Imuran. I failed on Cellcept and IVIG caused me to get chemical meningitis. Every morning it would take me 30 to 45 minutes just to get out of bed. I experienced chronic headaches from the numerous neck and hip problems which started as a result of falling repeatedly and unexpectedly. It was very embarassing to lose control of my muscles without warning. Going into the office was not an option on most days. I've been in this place before and I knew wellness was possible but this time I wasn't sure how. I love being very active and sickness is not part of my life's plan. Keeping a positive attitude and staying in gratitude are vital tools for wellness. I still have a lot of places to see and being ill for two years was taking a toll on me, my family and my professional career. This latest MG flare up started on 12/12/12 shortly after being given the wrong medication from a surgery that resulted in a serious infection. This serves as a reminder to ALWAYS have a medical advocate. I spent the next two years looking for the right combination of medication and supplements. As a result of the uncertainty of my professional career, I purchased a travel franchise. Owning a travel franchise would allow me to work from anywhere which at the time meant my bed. Just because my body was failing me I knew I had to make my franchise about more than planning fabulous vacations. I decide my focus would be on providing an opportunity to help non-profit groups raise funds via a travel program, servicing the LGBT community and people like myself with special needs. Mentally, I knew I would prevail but my body had other ideas.
My neurologist referred me to an oncologist to get a Rituximab treatment. This is a light version of chemotherapy that does not cause your hair to fall out. I felt like I was at the end of the line and agreed to it. Feeling like you are about to die at any moment has a way of turning things around for you. Not losing my hair was key and vain on my part . My hair covers my butt and losing it to a toxic drug like chemo would not have sat well with me. To my surprise my insurance company called me to let me know how great Rituximab works with MG. They also informed me my out of pocket cost would be $5000 per session! My stress level went up at the thought of adding more medical bills. A five day delay at the oncologist's office caused me to seek help elsewhere. This help was found by seeing a three part special on medical marijuana but more specifically hemp seed oil and cannabinol or CBD for short. I'm not a smoker but I was curious about the oil. The show talked about the difference between CBD and THC. In short the CBD does not have the component that makes you high and therefore is able to be sold legally in all 50 states. Once I heard the various stories of how the CBD oil helped people with neurological disorders, pain, stress, cancer, and other symptoms similar to myasthenia gravis I had to try it to relieve my symptoms. I figured it had enough in it to help with myasthenia and the way it worked in the body made total sense to me. It was in-line with my personal theory on how myasthenia gravis should be treated. I went to their website and there were countless abstracts referenced on conditions ranging from cancer to rheumatoid arthritis to MS. Taking a chance would be an easy decision. I knew marijuana had healing properties but never took the time to find how it worked. I had nothing to lose except the $200 it would eventually cost me for a 1gram bottle and a 3gram bottle. I started the 1 gram drops on August 27, 2014. In doing so I made the decision to stop taking all of my myasthenia gravis medication. Looking back I can see how this could have gone horribly wrong and would not recommend anyone do it without working directly with a doctor. My body is very sensitive and if I take something I usually know within 24 hours if it will help or the known side effects.
I noticed a change in my body from the first dose. My body felt like it was calming down from the ceilng to the floor very slowly and methodical. I was able to go up and down stairs with little fatigue. Getting out of bed is no longer a problem. I'm able to exercise again for the first time in years. I feel like I'm getting my life back however I still take things one day at a time. Myasthenia Gravis is unpredictable. Knowing my body could fail me at any time keeps me humble. I don't take this renewed energy of life for granted! I am still off of all MG medications. This is what surprised my neurologist. Hearing how I got myself well from taking hemp and legal CBD oil sparked his attention. He wanted to know if it made me high. I advised him it doesn't and it can't because it doesn't have the THC. He found this fascinating but of course he did his professional duty and performed various strength evaluations.
My neurologist couldn't believe how much strength I had compared to two months ago. I showed him my lab work which revealed my liver enzyme were finally in a normal range, my blood counts were normal and the nine panel drug screening was negative for everything tested which including marijuana. For good measure I also provided a urine analysis that was also negative for marijuana. My neurologist advised me to keep the Mestinon handy but encouraged me to stay well. The Rituximab treatment would be revisited only if I started to feel poorly. He wanted to see me in three months to make sure I am staying well. I told him he could give his patients my number if they have any questions about what I did to get well. I called the CBD company to thank them for making such a great product that is helping me live my life fully. I don’t know if this will work for anyone else but I would be remised if I didn't share. If this information helps just one person it is all worth it. I have been sharing my journey and more people are finding it helps them however others did not find relief in their symptoms. I have a theory as to why but you will have to read it my book.
Forget whatever preconceived notions or hang-ups you may have about marijuana. Trust me I had plenty. This is hemp. Check out the research and keep yourself informed. Some of us can’t afford the price tag that “chronic illness“ carries with it. Waiting a decade for approval is simply too long. Critics of CBD will claim my results and the results of many others is just anecdotal. The fact is I am off of all MG medication and I am living FULLY. Can it still be considered anecdotal when you've reached the five year mark? I welcome assisting with any CBD clinical trial for Myasthenia Gravis.
I know all CBD is not created equal which is why I can only personally recommend a handful of brands. Make sure the CBD you are considering has certification of its contents. Look for the words "Full Spectrum".
The United States Department of Health and Human Services filed patent number 6630507. The title of the patent is "Cannabinoids as antioxidants and neuroprotectants" for use treating a wide range of diseases. Just let that sink in for a moment.
Eliminate toxic people or have limited contact with them. You are too important to keep dragging yourself down with negative people.
Spiritual balancing for my mind, body and sanity.
Experience as much of life whenever and where ever possible. I'm always mindful that life is not a dress rehearsal and putting off things usually means it will never happen. Instead, I make plans and more plans to live a full life. Don't be afraid to put yourself first. It is not being selfish. It is being responsible.
Don't take on other people's stuff. Some people love to dump their problems off on you and explect you to fix it, do it or solve it. If you have not gotten your own health under control your response should be a polite no. In fact practice saying no if you have a hard time. When you are in a better state of health you can see more clearly and then assist others with more positive and loving energy.
Light daily exercise. As a certified personal trainer I figured out what works for my body. I recommend moving your body with purpose for at least 15 minutes in the morning and 15 minutes in the evening. It could be dancing, light exercises with low repetition, chair exercises, walking, etc. You have to do something everyday to move your body. If you can't move your body on your own ask a love one to help you. DON'T stay stuck in one place on the couch, bed or in your mind!!
Vitamin D3 - I take 5000IU three times a week for bone and immune support. Ask your doctor to check your levels first.
Probiotics - I use one 50 billion unit at night.
Apple Pectin - One 1,400mg capsule a day for my heart.
CoQ10 - Taken at night for my heart
Digestive enzyme - Taken as needed if my stomach is upset.
Kelp - Instead of taking a capsule I add it as a spice to my food in place of salt. This helps my thyroid.
Meal replacement smoothie - I use brands like Prograde, Vega , Aloma Lily or Metagenics brands. Smoothies are great when you are having difficulty chewing. I also make a variety of green smoothies. These smoothies are a powerhouse addition for my digestive health, improving energy, adding vitamins and other nutrients.
B 12 injections - I use to get these weekly before I was diagnose with MG to boost my energy and to help me travel for a week. Now I get them when I've overworked myself or to prevent fatigue when I travel. If I am unable to get an injection I will use a B-complex supplement. One thing to note is you may want to get Methylcobalamin injections verses the synthetic version Cyanocobalamin.
As with anything check with a licensed medical doctor for possible contraindications.
I studied various holisitc health treatments and I prefer using tools that support the whole body. I usually have 2 or 3 homeopathic remedies on me at all times.
Cannabadiol also known as CBD:
I take a 1 gram (250ml) drop in the morning before I put anything in my mouth. This is very key for the receptors. Keep the CBD under your tongue for at least a minute or two at a minimum. Do not drink or eat anything 30 minutes before or 30 minutes after taking CBD drops/tinctures. If you decide to try CBD pills take them on an empty stomach and wait at least 45 minutes afterwards before eating.
In the evening I take two drops of the 3gram (500ml) bottle at night or when I over do it. If you decide to try it let me know how it or if it works for you. Some people may need higher amounts of CBD or even the one that has a low dose of THC in it. By low dose of THC I’m referring to percent.
My symptoms started in 2001 immediately after getting a vaccination for a mission trip in Africa. I believe the vaccine activated the myasthenia gravis. I was extemely fatigued that later led to double vision, difficulty holding anything, slurred speech, then muscle weakness in my legs which caused me to fall and on some occasions unable to get back up. I did not get diagnosed with MG until 2003 when I went into a crisis while trying to return to Duke University to complete a project. All I wanted was enough energy to make it to the airport so I wouldn't miss my plane. That crisis landed me in the hospital for over 30 days where the treating neurologist thought I was drug seeking or a needed physic consult. I have since learned most women of color are accused of drug seeking when they are presenting with similar symptoms. The symptoms didn't make sense to any of the half a dozen doctors who treated me so I knew I was in for a fight with this unknown neurologist. I never once asked for a controlled substance. I couldn't walk and needed answers! Thankfully, I knew several doctors at this hospital who knew I was not faking or drug seeking. When the lab work and nerve conduction study with repetitive stimulation both came back positive for myasthenia gravis it was all hands on deck and suddenly I was being treated like a science experiment instead of person. Apparently the acetylcholine receptor (AChR) antibodies in my bloodstream were higher than the hospital had ever seen. I tested positive for the binding, blocking and modulating acetylcholine antibodies removing any doubt as to my diagnosis. Why do some medical professionals miss this diagnosis? Why had it taken so long for answers? The medical treatment at the hospital was less than stellar. Countless medical mishaps almost resulted in my death. All I could think about was getting out of the hospital and finding more natural solutions for my health and wellness. Sharing my experience allows others to put it on their radar to always have someone with them or their loved ones for ANY and ALL medical visits.
Yes, but only after I got confirmation of a tumor on my thymus. Having your chest cracked open is a major deal. The first surgery had to be repeated to remove defective wires. To date I've had three surgeries on my chest and radiation!
My first surgery was in 2004 and I wish I did more research back then. I would have requested information on the robotic surgery instead of having my sternum cracked opened. This surgery did not put me in remission. The second surgery in 2006 was to remove the defective wires that were literally poking through my skin. It took several doctors figure out why I was still in so much pain.
The second surgery was scary because I was told if my sternum was not closed enough I would have to get a plate put inside my chest. I decided I needed a health advocate on standby during the surgery. She made sure my wishes were carried out and that I wouldn't become a medical experiment.
The third surgery was as result of a huge painful hypertrophic scar that formed over my incision. It took a while to find a doctor I thought I would be comfortable with. Thought is the operative word. The doctor conducted a video visit while I was in his office. When I asked where he was I was told he was between surgeries. On the day of my surgery I did not talk to him until seconds after being giving the Propofol. Maybe he was having more video appointments. I don't know. I was not afforded the opportunity to discuss the action plan. I knew I wanted a picture afterwards and I was lucid enough to ask the nurse to take a picture. The next thing I knew I was being dressed and prep to go home. I also had a surgery on my left wrist at the same time. In looking at the scar I believe a student or someone with an unsteady hand made the incision! I suffered a major infection and the surgeon refused to see me until I told his nurse I would file a complaint with the medical board. I had to get treated by three different physicians who all said the surgeon should be the one treating me. I don't know if it was a case of ego, pride or stupidity with this surgeon. I didn't want this horrible experience to happen to anyone else so I filed a compliant with the medical board. Doctors simply can not forget to follow-up on a surgical patient who is having complications. What I learned from this was how to be a better health advocate for myself and others. If something feels wrong or in my case you didn't need to be a trained medical professional to see I had a serious infection. It's okay to see another doctor if you can't get in with your primary surgeon. If I didn't seek care I would dead. Always take pictures or video of what is happening to you. This helps to explain to the doctors your condition.
These are explained in my book.
Advice to others:
You will always know YOUR body than anyone. You must decide for yourself what YOUR wellness and life looks like. Don’t be afraid to try new things for your wellness. Don't be afraid to fire your physician if you are not improving. Considering there are only one drug indicated for myasthenia gravis by the FDA everything else is OFF label use!! Make your physician aware whenever you start something new. Seek answers to your wellness even if it is not popular, sanctioned or recognized by others. Seek assistance from a functional medicine doctor . THIS IS YOUR HEALTH!! Share your wellness with others.
Find a functional medicine doctor www.IFM.org
I am grateful and thankful for every day I do not have to subject my body to toxic drugs and body moves when I want it to move. I have been able to travel the world and experience different cultures, provide much needed items to economically deprived countries, create fundraisers for the causes close to my heart, meet some amazing people (everyone is a VIP so I don't get hung up on titles or status), zip-lined in several countries, snorkeled in Hawaii, found the best gelato in Italy and the tenderest calamari in Montenegro, photographed my journey and I'm just getting started! Life is waiting for you to enjoy it. Create a vision board and get back to living the life you were meant to live!
Yes, Dawn is a motivitional speaker and MG advocate and so much more. She is a former MG Walk Hero for Georgia and MG Walk Ambassador Winner! She remains passionate about finding a cure for MG one day. To date her MG Walk teams have raised over $19,000. She is the founder of the Myasthenia Gravis Miniority Group and the MG Holistic Society.
Check out this great video on Myasthenia Gravis
Interview with Michael Carr of Bougie Black Brother and The Minorities Report Podcast
Check out this great video
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Travel to Europe for a 7 day cruise out of Barcelona.
I pay attention and listen to what my body needs for health and vitality every day.