An Integrated Process: Me and Myasthenia

[Erin Wood]

Here's a paper I recently wrote for anyone who'd like to know more about auto-immune diseases or myasthenia gravis in particular.

I've been having a weird year, not exactly what I had expected when I made my New Year’s resolutions. I find myself feeling nostalgic for calmer times in my life, with less forced change. But, change is the only constant, right? Now that I think about it, ever since I took off to Guatemala last fall, my life just hasn't been the same. Volunteering as a medical provider in a clinic and a hospital on Lake Atitlán, I worked alongside a friend of mine from AIMC. We provided low-cost acupuncture to the people living around the lake that was surrounded by three volcanoes. In this setting, my clinic confidence and needling technique certainly improved and being away from the Bay Area reminded me of the world outside AIMC. Needless to say, it was refreshing and a good change of routine. One just can’t be the same after living in the forest and working in a place so stunningly beautiful and heart-breaking at the same time. I came back ready to focus on school again. But then, sometime in March, as I was preparing to dance samba in San Francisco’s Carnaval Parade, my arms started getting really weak, my eyelid was dropping a bit, and I just didn't feel myself. I was having trouble speaking and tea spurted out of my nose a few times, so I knew something wasn’t right.

After a few tearful days consulting with everyone I could think of, I finally went to a neurologist. I was reluctant because of the serious limitations of my health insurance, if you can even call it that. At least I had some form of coverage. After some blood work and drug therapy, I sent this email out to my close friends and family:


Hiya,

So the test for the antibodies for Myasthenia Gravis came back positive, which totally makes sense with the symptoms I have been having.

From Wikipedia: “The hallmark of myasthenia gravis is fatiguability. Muscles become progressively weaker during periods of activity and improve after periods of rest. Muscles that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are especially susceptible. The muscles that control breathing and neck and limb movements can also be affected.”

Luckily, the medication I've been taking is helping lots, but of course, I want to get to the root of this auto-immune condition. So, I'll be cleaning up my diet, reducing my stress levels, and taking some supplements to help my body heal itself. The next thing I need to do is get a scan of my chest to make sure I don't have a benign tumor of the thymus gland. Maybe I'll do that next week. I'll keep y'all posted.

Thanks to all of you for your support with all of this.

Lots of love, Erin


Myasthenia Gravis is an auto-immune disorder that literally means serious muscle weakness, and that’s exactly what I’ve got. Over the last few months, there have been times when I have suddenly lost all strength and control over my arms, having dropped a platter of food or a glass of water, a feeling of my body betraying me. On a few occasions, I have been unable to trim my nails and wash my hair. My grip strength just isn’t what it used to be and I feel like I have aged decades in only 3 months.

Since the diagnosis, I've been looking into lots of Naturopathic remedies to balance my immune system, and I continue to take low doses of my medication. I am using a glutathione anti-oxidant cream, taking a multi-vitamin, extra Vitamin D with fish oil, and an acetylcholine supplement to boost my medication, so maybe I don't have to take as much. One of the possible side-effects of the drug for muscle weakness is extreme muscle weakness. Ironic, isn’t it? So, I don’t want to end up worse than before just because I’m looking for a quick fix. Actually, I am not looking for a quick fix at all. I feel grateful that this is a condition that isn’t an emergency, but rather a life process, which will hopefully arm me with the right tools for a healthier and happier life. I am an experiment of integrative medicine, and a student of an integrative medicine school. I am doing fine and definitely keeping my priorities straight. They are: studying, relaxing, taking it easy, and visiting with friends and family.

I am realizing how much attitude really is everything. Two things that help me work with this are talk therapy, which I’ve just started and reading, which I love to do anyway. Right now, I am reading this uplifting book called Kitchen Table Wisdom, Stories that Heal by Rachael Naomi Remen, M.D. She writes about the hope, strength, and insight that she has seen over the years working as a pediatrician and counselor for people fighting cancer.
On the physical side of things, I am getting acupuncture at least once a week, sometimes three times per week. Now we have changed my diagnosis from a Liver-wind paralysis like Bell’s Palsy to one of my more Yin and Qi deficiency causing this auto-immune dysfunction. I have gotten simple calm shen treatments, to more direct tonification with points like Ren 6 and LIV 8, to circulating the Qi with 4 gates. I have gotten local points on my face when my eyelid was drooping, and the motor line on my scalp to strengthen my arms. I am still not sure which type of treatment works best, I know one of the keys to my improvement is calming my shen to cope with uncertainty and decreasing my stress so that my immune system can re-balance itself. I want to be careful not to tonify and boost my immune system too much, but to balance it. One of the mechanisms that is affecting me most is the hyperactivity of my immune system. It somehow got the impression, through stress, toxins in the environment, who knows what, that it needed to work extra-hard and attack itself. But, I don’t want to take immuno-suppressants at all, which is one of the Western approaches to treating Myasthenia Gravis.

What I am taking is called Mestinon, which is an anti-cholinesterase medication that inhibits the break-down of acetylcholine in my synaptic cleft between my nerves and muscles. It makes me stronger and reduces my symptoms of the drooping eyelid, difficulty speaking and chewing, and the weakness of my grip and arms in general. The medication truly does its job, but I have to be careful not to take more than 240 grams per day.
I finally got an x-ray to make sure that a thymoma wasn’t causing the problem. At this age, my thymus gland would normally be quite small and inactive, but a benign tumor on the gland can be the cause of myasthenia gravis, so we wanted to rule that out. I sent out another email to my friends and family:


The chest x-ray seemed to show that everything is normal with my thymus gland, my neurologist trusted the radiologist's report and I will, too, so no surgery! I am relieved and still fine-tuning my medication, getting acupuncture, and doing general wellness and immune-balancing stuff. Still having ups and downs, but thanks for all your support and love, Erin


That pretty much brings me up to today. It’s been and continues to be a fascinatingly frustrating and sometimes surprisingly heart-warming process for me. I am going to continue with the acupuncture and functional medicine. In addition, I am looking into getting IV glutathione to help my body clear out any extra toxins that might be contributing to my condition. At the same time, I am trying not to get too wrapped up in all the details and just live my life. I am sure I won’t come out of this the same, that’s about all I know.

-Erin Wood
July 2009

[Mandy Rosenberg]

Erin,
Thank you for sharing your story. You are a very strong and amazing lady and I know that you will make it through this even stronger. I totally understand the frustration that comes with autoimmune disease as I have also dealt with that myself. The way we deal with it in our mind and our spirit is so important for not letting it take over our lives. It sounds like you are in a good place, but if you ever want to chat I'm around the school halls. Hope you have a relaxing and fun break, see you in September.
...Mandy

[Amy Shouse]

Erin,

Wow. I had no idea you actually got the diagnosis. Actually, months (years now?) ago when your trimester cohort was going through comps I remember seeing you at school and talking with you about the sudden weakness in your eyelid. My first thought was MG- only because my thought process tends to go to autoimmune dysfunction as one of the first things I think of. When I see you around school i very often have wondered how all that ended up playing out because it seemed that you may have suspected Bell's Palsy at first?

Well, nonetheless, I want to thank you for sharing. It sounds like you are doing a lot of things to benefit your system. Right now I can only imagine that you are sort of going through a process of digesting this whole thing. If you ever want to talk about any of this let me know. I don't typically like to give out unsolicited advice but I'll let you know that I have a lot of resources if your ever interested. Autoimmune Dysfunction is of great interest to me and I have done a lot of research on it. I have Hashimoto's (as you probably know) and some kind of idiopathic peripheral demyelination issues that my Neurologist can only label as "something related to your Hashimoto's." My sister has CREST- a form of Scleroderma. Anyway! Just wanted to again, thank you for sharing your experience and I am open if you ever want to connect and chat about this stuff!

Be Well!

Amy