Hi I am Bill in Denver and have had nerve/muscle issues for about 2 years now. I have seen many medical folks and think I have MMN. I will be returning to my neurologist who hinted at MMN last time I saw him 8 months ago. Has anyone with MMN experienced speech changes? Specifically when I am tired I can not say long poly-syllabic words very clearly. I also have neck cramps.

My progesssion of symptoms is a as follows:

4 yrs ago did fair bit of construction on my home and end of day got hand cramps when using them.
2.5 yrs ago started a one year long major remodeling project and first noticed I could not turn a key. Then noticed my muscle between my thumb and pointer was shrinking so went to an orthopedic DR who took Xrays of my head (looking for tumors) shoulder and an MRI, an EMG, and a battery of blood tests (metals too). Abandoned them and wet to hand surgeon who freaked out and called his neurologist. Went to neurologist who did more EMG work, and an MRI of my neck and shoulder looking for pinched nerves and other stuff. He felt strongly I did not have ALS or MS which made me happy. He hinted at MMN. I lost my job so have not pursued it further. During this time (1.5 yrs) I did extensive chiro and massage of the arm ad shoulder hoping to losen any pinching that cold be causing this problem. IN the last 10 months have had no treatment and my right thumb is useless, arm muscles are thinner, hand muscle mass is thinner in palm and back f hand, left hand is feeling weaker, and have twitching everywhere. My neck is also cramping a bit more and my speech is affected, mostly at night when tired. Last two weeks I saw an accupuncturist who put needles everywhere but also did e-stimulation for abut 40 minutes on both arms between forearm and thumb. She has also recommended some Herbal remedy that helps nerves. So what started these problems??? 1. major life change (got divorced, happy but anxious), stared a job with 2.5 hrs of commute daily, lots of mouse use, did major construction for a year after work in an old 1922 house so maybe metals impact, and lastly been eating much more red meat and lots of cheese (but it tastes so good and quick to prepare), and got remarried and moved to new house...so stress, metals, meat, and heavy construction. Anyone in Denver that can recommend a MMN experienced DR?

Anyone experiencing the neck cramps and speech problems? Anyone have a possible cause/trigger for their MMN?

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.

Bill,
I would highly recommend you see a neuromuscular specialist. Unfortunately, these neurologists are few and far between, and normally only exist in a university setting. In Denver, there is Dianna Quan at University of Colorado. Start there. If you are up for a trip, then I would recommend an MD in Phoenix who is an expert in MMN/ALS/Neuromuscular, or a host of other docs around the country. Mayo is also great but might take a while to get into. I hate to say this but typically MMN doesn't affect the neck or speech. You absolutely need to be worked up by a specialist soon. The good news is if it truly is MMN there is treatment for it, although it is a complex intravenous treatment, the effects are immediate. But you really should be seen to get a definitive dx.
Hope you're doing well.

Hi MichelleG

I found that the Mayo was quick to let me in (about 4 weeks) as soon as they found I had an MMN diagnosis. It was less of a wait than to initially see my neurologist at the University of Utah.

Also, the IVIg hasn't done much for me, after a year.

4 weeks, that's pretty good! Normally with MMN, the effect of IVIG is immediate and dramatic - strenth returns, twitches decrease. Have you gotten worse? Of course Mayo is one of the go to places in the country for any condition!

Hi Everyone
I just stumbled across this forum today and have learned so much! My husband has been struggling with neuro symptoms for over 7 years. We took another trip to the Neurologist on friday he finally might have a diagnosis of MMN. He said that my hubby has to come back for an MRI (because MMN symptoms don't show up on an MRI so its to confirm diagnosis) then he will be refered to the head of Neurology at Vancouver General hospital (we live in BC) and then he will be given IVIg therapy. So we have to wait another 4 months for treatment. My husband is frustrated beyond belief. He has a foot drop in his left foot(where the symptoms started) and is starting to have a wrist drop in his left hand and hes left handed. I was wondering how much is the IVIg therapy? We have medical but we might have to pay first and then be reimbursed.
Thanks Lauren

IVIG is very expensive. It runs over $100 USD in the states PER GRAM. It is dosed by weight and for MMN the dosing is usually 2 gm/kg. Needless to say depending on how much someone weighs it can get extremely pricey. Here in the states you can get it at home, which is less costly than in the hospital of course. I'm just sad you all have to wait for 4 more months to get the treatment. I hope all goes well.

I started IVIg about 15 months ago and, yes, still declining. My Mayo doc says t is hopefully slowing the decline. Impossible to say without stopping completely to see what happens!