One of the Lucky Ones.
by Brenda Perales
While my journey with Multifocal Motor Neuropathy (MMN) has been an emotional and sometimes frustrating one, I am definitely, “one of the lucky ones.”
At a long-overdue appointment with my regular doctor to discuss symptoms that I was sure were stemming from problems with my back and residual side effects from a broken leg he ordered blood work and an MRI which came back normal. As a result, he recommended I visit a local neurologist.
At that point I began to get really nervous… having a hard time understanding why I was to see a neurologist in the first place, and wondering what further testing might uncover. The neurologist said, “You don’t seem to fit neatly into any box,” and explained that his primary goal would be to rule out Amyotropic Lateral Sclerosis (ALS.) He encouraged me to seek an opinion from Dr. David Cornblath (a specialist in ALS, CIDP, and MMN) at Johns Hopkins University Hospital, in Baltimore.
The idea of having ALS can overwhelm anyone, and everything! I was beyond anxious at that point, and wondered, “How could this be happening to me?”
My scariest, and also most reassuring moment, happened while I laid still in my hospital bed at Hopkins. Dr. Cornblath’s tests showed “a lack of reflexes and very slow progression over a long period of time,” which caused him to say, “While many things point to ALS, I am not certain.” I remember covering my face with my hands and bursting into tears while my husband, Michael, sat at the end of the bed in stunned silence.
Dr. Cornblath ordered additional tests, and three months of observation. “ALS normally progresses,” he said, “but MMN usually does not.” We’ll see, we thought!
Fearful of a diagnosis of ALS, all I could think about over those last few months was if I would live to see my two sons graduate from high school, marry, and have kids. It all felt so overwhelming!
Fortunately, the tests returned normal—repeat examination had shown no real progression. Thus, Dr. Cornblath thought that a trial of IVIg might be useful.
Three days into IVIg treatment, Michael and I were at Costco when he turned to me and said, “I don’t hear you coming!” It took a minute to register what he actually said, then it hit me. My dropped left foot was not flopping and slapping on the floor! I was walking better, and, I had more strength.
Dr. Cornblath was the most surprised of all to see how well I responded to IVIg. A favorable response meant we could finally rule out ALS, and prompted my final diagnosis of MMN.
One year later, Dr. Cornblath suggested a switch from IVIg to SubQ. The transition took a few months, and never in a million years did I think I would be able to stick needles (albeit small thin ones) into my own body.
Saying I was a bit nervous would be an understatement!
Today, the positives of SubQ—which makes me feel close to normal again, or as I like to say, “my new normal,”—clearly outweigh the negatives of IVIg.
So, why do I think I was one of the lucky ones? Of course, not having ALS is at the top of the list. But, it is only one of many reasons:
- Most people with MMN see about four or five different specialists before being diagnosed—I saw only one.
- A lot of people with MMN are misdiagnosed as having ALS, but I was only under that terrifying cloud for a few months.
- There are only a handful of neurologists that really understand, and specialize in MMN. I was referred to an amazing physician practicing at one of the finest medical institutions in the world, who is comfortable, and familiar with, the idea of prescribing SubQ. He worked with me until we got it right. He worked with my insurance company to insure coverage. He restored my quality of life and allowed me to regain my independence.
- I am one of the 5% of people managing a rare disease that has an FDA-approved treatment.
- Most importantly, along with my wonderful husband, Michael, I have a supportive and loving family and friends who are always here for me, including Cindy, my terrific at-home nurse, and all of my MMN Facebook
Three years after this whole ordeal began, I still wake up every day feeling incredibly thankful. So how could I not be “one of the lucky ones?”
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