When I was first diagnosed with MG, I remember my neurologist telling me how he’d just put me on Mestinon and I’d feel “much, much better”. But I didn’t. In fact, even on the smallest dose, my symptoms got worse – so bad that I couldn’t dress myself, drive, or breathe properly. His next suggestion was Prednisone, but I’d only heard horror stories of extreme weight gain, depression, sleeplessness and psychosis about this one. I refused, and so he said he’d “have to do some research” to look at other options.
While he was off researching, I started doing a little research of my own and found that many people had found relief from their autoimmune symptoms through diet – specifically, a nutrient-dense “paleolithic” diet called the Autoimmune Protocol (AIP). I started following the AIP, but it wasn’t the magic bullet I’d been hoping for. Meanwhile my doctor started me on IVIG infusions, but they also didn’t take away my symptoms completely. I was much more functional, for sure, but a sleepless night, back-to-back deadlines, and emotional stress, all brought my symptoms back with a vengeance.
Over time, I came to realize that no single thing (or pill) was going to fix me up and give me back my life. I’d have to take a holistic approach that wouldn’t just treat the symptoms of MG, but also address the environmental factors that cause it to flare up. I’d also have to find ways to improve my health overall, and create the right conditions for my body to heal. That meant dealing with my chronic insomnia, my constant and utter exhaustion, my brain fog, gastric distress, mood swings, depression, anxiety and other chronic issues.
I can’t emphasize enough how much lifestyle changes has done for my symptoms, my well-being, and outlook in general. But I also understand that MG is a highly individual disease which manifests itself in different ways in each patient. What works for me, might not work at all for you, and vice versa. Nevertheless, I hope that newly diagnosed patients, or those who’ve hit a wall in their recovery, can benefit from this post, get some new ideas and, maybe, save some time – and nerves! – along the way.
So here we go, a list of everything I’ve been doing to improve my MG symptoms and health more broadly:
IVIG: I’m getting IVIG infusions over 4-days every 4-6 weeks, depending on my schedule. That is the only “drug” I take for MG and I feel lucky that I have a neurologist (and insurance!) that approve of it. Most people with MG I have met are on some cocktail of mestinon, immunosuppressants and corticosteroids (or worse). IVIG isn’t fun and it’s quite the time commitment, but the side-effects at this point are minor and the improvement I have seen over time substantial. I’ll be talking about my experience with IVIG in more detail in an upcoming post, meanwhile I just want to say that if your doctor hasn’t brought it up yet, talk to them about it!
Thymectomy: I had my thymus removed last year after. Apparently it takes around a year for patients to see improvement in their symptoms, if they see any at all (around 40% don’t). The surgery wasn’t fun (read more about it here) and it caused a huge flare-up that forced me to spend a month post-op in rehab. At the time I regretted my decision to have it, but seven months later I’m starting to feel stronger and I’m hoping that I might be one of the lucky few to go into remission. Fingers crossed!
Physical therapy: Along with IVIG, physical therapy was one of the first things my neurologist recommended (post the mestinon letdown). I was sent for an eval and we decided to work on my double vision, my balance and my core. I can’t say that PT has made my MG better per se, but it’s helped me understand my symptoms and body better. Now I know why and how double vision occurs, why I have trouble walking down hills or wearing heels and, most importantly, what I can do about it, and for that I am grateful. I don’t just think “Oh myasthenia makes me weak”, but I know which muscles are attacked most and what exercises will help strengthen them. I’ve had about 24 PT sessions so far as an outpatient (I also had daily PT while in rehab post-op), and I’ve been given a home program I’m supposed to work on on my own, but I’m frankly not that good about it. I think if I was more consistent in my practice, I would see even more improvement.
Occupational therapy: Before I started getting IVIG, the muscle weakness in my hands was pretty bad. I couldn’t write using utensils, I had trouble dressing myself, carrying bags and working in the kitchen. Cutting sweet potatoes? Forget it! Because of scheduling difficulties, I never managed to get OT prior to my thymectomy, but after the flare-up, I got it daily while in rehab and, much like PT, it taught me a lot about how to optimize my movements to save energy, strengthen my muscles etc. After I was released from rehab, I was prescribed another six sessions as an outpatient where I kept working on my strength and endurance. But once I’d recovered from the surgery and was back on IVIG, I improved so much that I didn’t feel it was worth the time-commitment anymore. I still struggle with heavy bags and hard veggies occasionally, and when I remember I do some of the exercises that they showed me, but much like with PT, I’m not that good with sticking to home programs, unfortunately.
Dietary changes: Improving my diet has been one of the most far-reaching changes I’ve implemented since being diagnosed. I started feeling better pretty much immediately after removing all processed foods, grains and sugar from my diet, particularly with regards to my digestive health. Gas, bloating and diarrhea (all of which I had “normalized” in my mind!) went away. MG itself didn’t go away, but I was feeling more alert, more focused and more “functional” overall. I couldn’t magically do crossfit, but I started having enough strength to drag my sorry body to yoga. Yoga in turn has been detrimental for strengthening my core and improving my balance, which make MG symptoms more manageable. Changing my diet has meant getting to know my body better and understanding what agrees with me and what doesn’t. Legumes, grains and sugars, just don’t. Coffee, nightshades and seeds, on the other hand, don’t seem to be an issue. Dairy I’m currently trying to reintroduce after being dairy-free for about two years. Right now, I’m following a ketogenic diet (sort of an adapted Wahls Paleo Plus) and it’s the first time I’m seeing significant improvement in my brain fog and mental acuity. I can be productive again! That’s amazing, after spending the last few years in what feels like a haze.
Yoga: I’ve already mentioned how yoga has improved my core strength and balance, which is so importance for MG management. But it’s also done a LOT for my anxiety and mental health – I’m generally calmer, more focussed, and more resilient to PhD bullshit stress. Less stress means less random MG episodes. Yoga, overall, I think, is very MG-friendly. You don’t have to run, there’s no danger of falling or, at least, if you do, you’ll just fall on your mat. I say that, because I was tying to ride a bike at some point and I fell, couldn’t get back up, and almost got run over by traffic. With yoga, if I feel I’m reaching my limit, I can just stop and take a child’s pose. On my mat. No cars. No problem.
Acupuncture: I started accupuncture treatments not for MG per se, but to deal with my insomnia. My insomnia reached a debilitating point around the time my MG was at its worst. While research on the matter is lacking, I am convinced that somehow the two are related. I used to sleep like a baby. I haven’t had a good night’s sleep in over five years. Before I started getting IVIG infusions, any particularly restless night was guaranteed to be followed by severe myasthenic symptoms. I could barely stand, see, function. While IVIG has done a lot for my MG, it hasn’t helped with the insomnia problem. I’ve tried herbs, I’ve tried sleep-hygiene, I’ve tried drugs (legal and illegal). Some of these things helped, but not really. Some things (like herbs) helped occasionally, but not consistently. Because my MG symptoms are so tightly related to sleep quality, I’ve been trying to improve my sleep (at no avail) for quite some time. Of everything I’ve tried so far, acupuncture has helped the most.
Another thing that I recently started, is Electrical Muscle Stimulation. I’ve been getting it during PT and I’m supposed to get a machine through my insurance company that I can use at home. E-stim is used quite a lot on patients with foot drop and/or MS, but I’m not sure yet what it will do for me. Research on its effect on MG is scarce and also mixed. Stay tuned!
Image by Flickr user USFWSmidwest and used under a Creative Commons license.