It’s March 2011, I have a husband, two cats, a job I really love, and a cute little apartment in downtown Savannah, Georgia. Everything is great. Except I start dropping things all the time and begin to feel really uncoordinated. My left arm starts hurting, almost constantly. My legs start to feel heavy when I walk, and walking becomes kind of slow and hard. At times, it feels like I’m in danger of literally walking into the ground. I find myself tripping and catching my balance a lot. I’m just not making physical contact with the world like I used to. All of my movements just sort of slow down. The left side of my body begins to feel strange, like how your foot feels in your shoe when the laces are untied. The right side of my body feels tight and together and the left side feels like its starting to unravel and fall apart. I start to feel anxious and I have some really terrible mood swings. I have a few explosions of anger over really small things. When I get home from work, I crash into the armchair and my body feels as if it’s powering down. I don’t think about things or busy myself with other projects or even read. I just sit there. When I’m in bed at night, my body again feels heavy. When I start slurring my speech, I head to the doctor.
We rule out Cervical Stenosis via x-ray (family history) and the doctor refers me to a Neurologist. The Neurologist gives me a few tests in the office – one is basically walk in a straight line – which I can’t seem to do very well, but I pass, – and diagnoses the pain in my left arm as Peripheral Neuropathy. Then she says I need to get an MRI on my brain to rule out Multiple Sclerosis. This freaks me out a little, but I dismiss my symptoms as the usual unexplainable CFS crap, and think maybe I just need some more Methyl B12 for things to go back to normal. I haven’t injected in more than a year, so maybe my levels have gotten too low. Maybe I really do still need it! I suggest this to the doctor and she agrees to check my B12 levels too.
When I get home and look up the symptoms of Multiple Sclerosis, I have quite a few, and it seems like there is a good chance I could have this. This really starts to scare me now, because they ARE symptoms I’ve never had before. Maybe I can’t just dismiss it as the usual CFS crap, because now I’m feeling clumsy and periodically slurring my speech. My legs feel heavy and I’m moving slower. This is all new stuff. Why am I having all this new stuff?
Long story short, the MRI comes back clean, (good to know, but meaningless since I’m still having issues) and the levels of B12 in my blood are actually abnormally HIGH! I’m a little shocked by this but remember reading somewhere that this could mean my body is having trouble absorbing the B12, and it’s not getting to where it needs to go. The Neurologist begrudgingly gives me another Rx for the injectable Methyl B12, after I plead with her that this was such a miracle for me in the past that I really need to try it again. I’m excited because I think this will get around the absorption issue if there is one, and all my issues will disappear! But it doesn’t help at all. Not even after a few shots.
Since my go-to panacea (depressingly) isn’t even touching these symptoms, I take to the internet to look at what other people have done. And although I haven’t actually been diagnosed with MS, I’m having enough of its symptoms, that it will at least serve as a good jumping off point. I google “alternative treatments for MS” and find an article by a man who reversed his Multiple Sclerosis through diet. He gave up dairy, wheat, and sugar and eventually recovered. It took him a few years because by the time he tried this, he had already been suffering from the disease for many, many years and was in a wheelchair. I had already given up dairy years ago, and sugar seemed a tough one to start with, so I decided to give up wheat and see if it helped.
The pain in my arm disappears first. A few days later my coordination improves and I stop dropping things. By the week’s end, my legs no longer feel heavy! Walking is no longer slow, and slightly lurch-like; it’s once again light and easy! By the end of two weeks, all of my symptoms are GONE! The feeling is almost indescribable. My body belongs to me again! I’m free!
At my follow-up with my Neurologist, I tell her what’s taken place and she says that yes, some people are really helped by a low sugar, dairy-free, gluten-free diet and that some people’s nerves are just very sensitive to those substances. I wonder why she didn’t suggest this to me in the first place.
I’m deeply relieved and grateful that I was able to end my symptoms and get off this scary ride. I feel enormously lucky. Enormously blessed! But the experience rattles me a bit. More than a bit. I realize that even with as much as I think I had recovered (if not completely) from CFS, I’m not out of any woods. I realize that whatever knocked me on my ass in 1998 had not been self-limiting; that there’s still some active agent of deletion, pinging around inside me.
I start to really think about my diet and my health after this. I begin to entertain ideas about liver cleanses, and revisiting some of the supplements I didn’t think I needed anymore. I’m sad that Methyl B12 couldn’t come to my rescue, and a little bummed that I have to restrict my diet yet again. (The symptoms all come back in a hurry if I have wheat now, starting with the pain in my left arm.) I consider going to my acupuncturist more regularly, and hunting around online to see if there’s any new ideas on the scene for treating CFS. I know I have to dive back into this world again, even though I’ve been eschewing it for the last 7 years. I wanted so desperately to leave it behind.
Note: Later I would learn via the Medical Medium that gluten is one of the foods that feeds EBV, and my sudden, dramatic recovery would make much more sense.
CFS | Endgame 
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