In 2008 I was strong and working out daily at my gym. I enjoyed running and tending to my seven gardens in between working in the pharmaceutical profession and raising my two children. I had noticed what felt like a callus on the pad of my right foot near my toes. It was bothersome and nothing seemed to make it feel normal. As the weeks went on my right foot was getting numb, on and off. I figured a pinched nerve. I didn’t do anything. In March of 2010 I had rotator surgery done on my left shoulder, which left my left arm and hand in a sling for a few months. As I worked in my greenhouse, I noticed I was having troubles picking up the flowerpots with my right hand. Ok, I thought, pinched nerve from the surgery and sling. However, as the weeks went on, that right hand of mine, kept getting weaker and weaker. By May of 2010 I was wearing a support from the local drug store to make it possible to pick up just a small glass of water. I knew something was not right. I asked my orthopedist, who was still checking up on my function from the surgery, if this was something he had seen? He suggested I see a neurologist. I started with the community neurologist. He stuck me with needles and pins, hit me with electrical bolts and told me until I had no pain, there was nothing he could do for me. I lived in the Philadelphia suburbs at the time and I knew the medical system well from my time working in pharma. I started at the top academic institutions and worked my way from there. Six neurologist and five months later I still had no answers. I was growing weaker and weaker. I had limited sensory in my left hand and forearm and the right wrist and fingers were of no use, just floppy. I was exhausted and angry. I figured I’d try one more time and went to Temple University Hospital. This was my last choice. Now, in Philadelphia, most likely like your town, it takes months to be seen by the best docs. But Temple made a call to this super-hero doctor while I was in the
room. The two talked briefly and I had an appointment before the week was out. I was officially diagnosed in December of 2010 and started treatment right after the Christmas holiday. Now the kicker. I was put on 80 mg of
prednisone and within 3 weeks I had all but crashed. Legs numb up to mid thighs. Right wrist, fingers, hand and most of my arm useless. Left arm and hand numb to all sensation and the right side of my face had fallen. My husband was feeding me my meals and we were afraid. I was hospitalized January 19, 2011 and started IVIG. The neuro team slowly began to down titrate the prednisone and, little by little, I got better. By June I appeared “normal.” My specialist, who at this time was one of the most renowned in the world, stated he had never seen anyone present this way. The team was confused. Turns out I have the variant, Multifocal Motor Neuropathy (MMN). It been a very long road and one I still confront daily. I am happy science keeps evolving. I’m especially thankful for those I love. That they have not given up on me and still hug me after I’ve had an ornery day because of the dreaded “myelinmunchers.” Below is a note I wrote for the attendees at this year’s GBS|CIDP Foundation Symposium. We all have our unique battles and long tiresome roads. What we do have in common is our unending resolve to keep going. Stay happy my friends.
You are Doing More Than You Realize…
I must give credit to my fabulous nurse, Jenny, as I begin to write this. I asked her, texted her, if I had anything inspirational to say to others? Had I said anything to her during the hours, days and years we’ve shared together, that had stuck out in her memory? The following is what Jenny texted back to me — what she has watched me do and say on my journey of 11 years with MMN. Be your own advocate. It’s critical to your outcome of achieving your best health. This Includes seeking a second opinion when you feel it’s needed. Trust yourself, you really do know what’s best for you and what is going on in your body and head. There have been times when I have not agreed with a physician. I was not being listened to and my feedback to the practitioner was not acknowledged. This was a very difficult time for me. I had anxiety before every encounter with my neurologist. I knew it could be better so I kept seeking knowledge and reading the medical literature from peer reviewed journals. Trusted sources for me. (Anxiety…..hmmmm….) This brings me to going to therapy. It’s ok! I would not be where I am today without
my psychotherapist. She keeps me focused on my intent. What is the outcome I am seeking? When I can no longer hold a book to read or groom myself how I used to, she helps me get to my new goal, to see happiness through my true lens. Happiness is one of my goals. I now know there are many paths to happiness. The most important lesson I have learned is there is no physical health without mental health. By the way, I did not find this fantastic doctor on the first try. It took four different therapists to find the one that worked for me. …I’m doing more than I realize….
I have strived for a positive treatment plan, one that is holistic. I’ve incorporated acupuncture. Acupuncture you might say? That’s out-of-pocket expensive! I searched until I found either an acupuncturist within my budget or a practitioner that does community acupuncture. When walking became too difficult in the summer months in Florida, I switched to swimming with a kickboard and flippers. I love it! I get up early, first thing in the morning and experience the sun rising as I kick, kick, kick. It’s good for my soul and body. There have been so many failures — with a few successes. These failures and successes have brought me to where I am now (a pretty good place). Arnold Schwarzenegger says, “Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender – that is strength” I didn’t know I was doing all things until I asked my nurse. I thought to myself, wow I’m knocking it out of the park! Which leads me to my newly found positive experience— don’t be shy, ask those you love and trust to tell you what you are doing well. Listen to their words and use it as your fuel to keep
fighting, moving forward. You’ve got this!