Diagnosis (Written 10/31/13)

I have been diagnosed with MS. I had no idea. None. For years, no one could figure out why I had bladder issues that resulted in urgency every 30 minutes. For years, I assumed it was normal that I would lose my balance and fall flat on my face (resulting in a broken nose on my honeymoon) or on my back or on my side – even when the path I was walking on was flat. When I couldn’t do ‘tree pose’ on one side of my body in yoga after years of even-bodied practice, I found it odd, but figured it was the result of an irregular practice over the last two years.

At Burning Man last August, when my back went out for two days and I cried in pain when I tried to turn to one side or bend over, I figured I’d just lifted too much heavy stuff without bending my knees. But then, I fell and fractured my coccyx mid-September. A few days later, my entire left neck, scapula, shoulder and arm were screaming with pain and subcutaneous itching. A tree branch couldn’t brush my arm without me writhing in pain. I couldn’t sleep without waking myself furiously scratching with no relief. The Doctor thought it was a pinched nerve as a result of the fall. I asked for an MRI, but he said I didn’t need one. At about that time, as I was walking down the stairs of my apartment building and it suddenly felt like the whole left side of my body had ‘slumped’. When I ran for the bus, all of a sudden, my knee wouldn’t bend and felt very wobbily…I couldn’t run. When I walked for a bit, my lower back ached with pain due to perhaps the fractured coccyx, but my left ankle was screaming with pain, too, and felt wobbily…what? My left foot and thumb became numb after a while. I tried to ride my bike, but my shoulder and neck and arm kept me up all night with tightness and pain worse than ever. My arm constantly felt tight – as if someone was clenching on to my muscle and wringing it in opposite directions simultaneously. I went to a chiropractor and through physical therapy and while there was some relief and improvement in mobility, my entire spine and left side of my body was stiff, hardened and totally uncomfortable. Pain became normal for me as I tried to figure this out.

 Finally, I pleaded with my Doctor to get me an MRI for my cervical spine to see if I had pinched a nerve. Five weeks after I initially saw him, he set it up. The technician said as I left, “It’s not a pinched nerve, you’ll probably be back in here soon for a brain scan. It could be MS.” I didn’t really take him seriously, but it certainly registered. An Ayurvedic master had previously asked me if I had MS when I'd complained of bladder issues.  She looked at my tongue, took my pulse and asked 'Do you have MS?'  'Of course not,' I balked.  The word MS returned again...What I didn’t know that the tech saw on the scan was that I had two lesions in my spinal column. One was old and small. The other was new, on the left side between C2 and C3 and shaped like a flame.

I was in mediation training for several days to learn how to be a facilitator in prisons for victim offender healing circles. It was heavy stuff. On Day 3 of the 4 day training, I received a voicemail from my doctor telling me that ‘concerning lesions in my cervicle spine’ were in my MRI and he was referring me to a neurologist immediately. I googled ‘concerning lesions, cervical spine’ and MS came up again and again. I remembered the words of the technician. Images of wheelchair and drool came to mind. I called my doctor. He called me back and said ‘it could be nothing’ or ‘yes, it could be MS.’ I remembered the words of the Ayurvedic Master, Sarita Shrestha so long ago and started to panic.  After two more MRIs, blood tests, a vision test and a spinal tap, the diagnosis was likely MS.

I am 40 and a newlywed. We want to have a baby. Toxins in my body scare me. I automatically went into the mode of researching alternative treatments so that I wouldn’t have to take medication. I barely researched MS. When I did, I was terrified about the worst-case scenarios that I saw. My family and husband weren’t comfortable with alternative treatment instead of medicine.  But, I wouldn’t listen - I was sure that I could find an alternative to deal with this. My sister asked me very carefully to listen to what the doctor said about medication instead of listening for what I wanted to hear. I didn't listen.  I found a miracle acupuncturist and was certain that I could rise out of this with steroids and acupuncture until after I was successfully pregnant. I thought, “I’m not that bad.”

And then a friend with MS called me. He gently pointed out that the myelin sheath is being eroded and that if I don’t stop that erosion and the sheath disappears, I’ll have irreversible consequences. He reflected to me that I actually was ‘that bad’ due to the fact that I’ve worn a maxi pad every day for two years, can’t carve a pumpkin for Halloween because it’s too heavy to hold and lift with my left arm, and fall to the ground somewhat regularly due to imbalance. He didn’t mention that I can’t run, ride my bike or lift heavy things with my left arm. He didn’t mention that I feel like I’m sloping on my left side when I walk or that I drag my left foot and trip at least once a block as I walk through the city streets. But, once I heard him, I noticed all of those things. I counted how many times I tripped on nothing as I walked through the park. Too many times. I paid attention and, indeed, I am ill. I need help. And I need to act as soon as possible to avoid permanent damage. But, how can I resolve to inject myself everyday with toxins?  There's got to be something else that I can do...

Shamans say that illness comes to someone who has ignored their ancestors and their universal purpose in this life. Once you surrender to the dark illness that consumes your body, your purpose comes out of it brighter than before. I see that I have turned off to my body in the past two years. I stopped my regular yoga and meditation practice, stopped keeping a journal, gained 20 pounds, haven’t been able to find gainful employment at the amount that I deserve and have generally watched a lot of TV, eaten out a lot and had a lot of wine every other night. I’ve been dull, mute, lifeless. All the while, my body has been wanting expression, health, wellness.

My mind has been training for mediation and volunteering to give and give and give, but it appears that I’ve given so much of myself that my livelihood has suffered. Not anymore. I’m awake. What’s good about this? I want to pay attention to my soul, my spirit, my body, my health. I want to use my gift of words and intuition to build a bridge with others through hard times. I’ll surrender to medicine just now, but trust I will build my health up enough to be back in tune with every bit of my body. Health, vitality, luster and of course a beautiful baby (I’ll go off meds when (s)he comes) to celebrate the beauty of life and all of its lessons.

Diagnosis: I have 90% diagnosis of MS due to 3 MRIs (cervical, brain and thoracic), lots of blood tests, a spinal tap and a review of all of my symptoms. The Doctor can’t name which kind of MS it is b/c this is the first flare-up; he’ll only be able to diagnose with time. There are two lesions (one old, one new) in my cervical spine. The brain and thoracic have a few white spots, but nothing to be concerned with. The one on the left is at C2-C3 and is the new one. As a result, I have spasticity in my left limbs. The bladder issues are older, but may also be related to the new lesion; who knows?

Treatment: I want to get pregnant, so copaxone seems to be the only option. This is a daily injectable and I’m hoping than an epi-pen version exists. I’ll go off copaxone as soon as I’m pregnant, while pregnant and while breastfeeding. I may then change to a different drug that has a higher success rate and is an oral pill. I’ll get better. Life is good. Hopeful I am, but I feel so mangled by this all. I was going to be Marilyn Monroe, but feel rather like a mangled Marilyn. Matt doesn't feel so hot, either. Here we are as Marilyn and Hugh a/k/a Jew Hefner - after being ravaged.