Hi Bill. We're neighbors—I live in Wyoming.

My MMN story starts eight or 10 years ago, with a tremor in my left hand. The next thing I noticed was weakness in my left hand; I couldn't even tear open an oatmeal packet. Over the next few years I could occasionally detect a tremor in my right hand, and even my legs. Around 2006, alarmed by these symptoms, I saw a neurologist who told me the tremor was benign tremor and the weakness was caused by scoliosis in my neck. This relieved my fears, so I ignored the worsening symptoms for several years, despite a secret fear of ALS. I had started getting twitches (fasciculations) and this is one symptom of ALS. Also things like turning a key, which you mentioned, were awkward.

A year ago, I woke up one morning and could not extend my left thumb. There was no pain or numbness. It was just that trying to lift my thumb felt like I was trying to levitate a table. First I went to my GP thinking it was carpal tunnel. He quickly disabused me of that idea, and sent me to the hand specialist. She got pretty excited and immediately called a spine guy, who was just leaving for the day. He did an EMG while she watched; they both got so fascinated that they ended up zapping me and sticking needles in me for two hours past the end of the workday. From that, I got a referral to a different neurologist who visits monthly from Salt Lake City. I also saw another spine specialist who said there was no way the scoliosis could have caused any problems in my hand.

Rather than wait for his next monthly visit, I drove to Salt Lake City to see the neurologist. My appointment was near the end of the day; once again a doctor became fascinated with the EMG results and he spent an extra hour sticking needles in me.

By this time all my local doctors had settled on MMN, but the neurologist was reluctant because he could not find a definite conduction block, and he prescribed IVIg but with a diagnosis of “atypical CIDP”. The initial IVIg treatment seemed to reduce the fasciculations for a few weeks. In the meantime, before the IVIg, I had lost extension in my index finger. The IVIg continued through the summer, and in August my pinky finger also quit working.

In September, at the suggestion of my GP, I called the Mayo Clinic to see if they would look at me, since MMN is so rare even my Salt Lake neurologist had never had a case. They told me I needed a doctor's referral to make an appointment; I said okay, I would get that, and hung up. 5 min. later the phone rang and the Mayo guys said “did you say MMN? Your appointment is in October.”

Long story short, the Mayo Clinic confirmed the MMN diagnosis. It was an amazing experience--I thought I was an old pro at EMGs, but the 4-hour one that they put me through made me cry. I went through four days of every test under the sun.

The Mayo neurologist said the IVIg would hopefully prevent any further loss of function, but would not necessarily reverse any damage. I know other MMN patients have had improvement with IVIg, and I will talk to them about possibly upping the dose when I go back to the Mayo next month. I'm just grateful I have good insurance. It's expensive, because I'm self-employed, and I have to be able to keep working to make the premiums.

They don't know what causes MMN, but I have some ideas. I worked in a photo lab for about 20 years, and wasn't always very careful about protecting myself from the fumes and the chemicals. Another possibility is pregnancy; I had a baby in 1997. I've never smoked, drunk much, done drugs, or been overweight. But I've been reading a lot lately about the “diseases of civilization” and think possibly a high carbohydrate, low-fat diet may have contributed. I'm currently on a ketogenic diet, which is actually being studied as a treatment for Parkinson's, Alzheimer's, and even ALS; I figure my nerves need all the help they can get.

Anyway, since you do have a tentative MMN diagnosis, you might consider calling the Mayo Clinic in Rochester Minnesota. I went there because they see as many cases as anybody.