Living With Chronic Illness: Symmetrical Multifocal Motor Neuropathy with Conduction Blocks

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In March of 2012, I had written a blog post about how we as a family live and cope with my husband’s neurological condition called CIDP.

I feel it appropriate to update this post because he does not have CIDP.

 But why did it take me so long to write this? To be honest, sometimes we just don’t want to talk about medical stuff. It does not define our lives, it simply becomes a part of it.

Anyhow, a few months after I wrote the blog post about CIDP, he was re-diagnosed with MMN. Multifocal Motor Neuropathy.

After having researched this condition and undergoing some horrendous medical procedures, and blah blah blah, in the end the drs doubled his treatment dosage and changed it from every 3 months to monthly. This made a world of difference! And he changed it to monthly because that is how it is done in the USA and my husband pushed for it.

This new monthly treatment made it possible for him to no longer use crutches! I felt I had my husband back. Our spirits were high and life felt pretty normal again, even though he still could not work, he could walk. He was stronger. He could play with the kids. He could use the stairs.

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I remember one day specifically. My sister had offered to watch our two young sons so we could have a lunch date. After everything we had been through, we could not stop smiling that day. We took the bus to the mall, had lunch there, walked around for a little bit and went back home. We held hands. We raced up the stairs at the train station. We laughed. We were living a miracle.

During about the same time, my papers were complete for us to move back to the USA. Yes life was so much better, but there were still unanswered questions and his diagnosis not very firm.

Now we are back in the states. He was seen by the head neurologist at Cleveland Clinic and spent an afternoon undergoing extensive testing for a firm diagnosis. Which is now: Symmetrical MMN with conduction blocks. Even he, the head neurologist, had not met anyone with this condition before. It is more common to be asymmetrical.

Anyhow, life goes on. As normal as we can make it.

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We focus on the things we CAN do and not on the things we cannot. We live for the simple ways of having fun: splashing bubbles in water, scooting around on our wood floors, going to the park, having an ice cream and good old conversation! I love Q&As with my husband and my kids! I love the simple things. And a simple life. I even like to cook simple. Dress simple. Why complicate it?

In the scriptures there is a verse that says consider the lily and all her beauty. I am convinced the lily does not complain that she wasn’t taller, or as pretty as the rose, or was another colour, or lived in another part of the field. We can be the same. We can be happy and grateful for all that we do have because our blessings will always outweigh our trials.

I know I have my moments of stress and I break down. I know we have had a depressing winter and sometimes reality slaps us hard. But I also know we are going to be okay. Some questions cannot be answered. And that’s okay too because we have God and prayer and each other.

Life is full of surprises and sudden turns. I used to say that everything happens for a reason. But if I am honest, sometimes I don’t want that either. So I will instead try and learn something from this experience.

On a note about my husband, he is the one who suffers this everyday. I do not always know how he is feeling, but I know my heart has grown softer with compassion. Not just for him, but for everyone. Not only those who suffer other forms of disability, but everyone. Because everyone is fighting a battle somehow. Everyone is faced with adversity.

Our boys are young and don’t know any different. This is OUR normal. Our world. Our life.

And life is good.

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7 thoughts on “Living With Chronic Illness: Symmetrical Multifocal Motor Neuropathy with Conduction Blocks

  1. Nancy, I am going to the Cleveland Clinic on the a week from this coming monday. I have had ongoing axonal neuropathy the past 14 months, following an influenza vaccination. CIDP has been suspected, but I don’t fit the classic symptoms. After reading about your husband’s case, I feel that I may have symmetric MMN as well. Did your husband’s onset of symptoms occur shortly after getting an immunization? there is a program called VICP (vaccination injury compensation program). Thanks for sharing your story. I hope I get some firm answers when I head up to Cleveland on the 16th.

    Thanks for sharing your story,

    Brian

    • My husband did not have any immunisations prior to his symptoms, but he did have a sinus infection. The drs basically have said that his condition is a stroke of bad luck! Unpreventable, incurable. Cleveland clinic is amazing, you are in good hands! We know it can be hard, prayers to your family and Good luck!

  2. I was diagnosed with MMN 10 years ago–it took two years for a definitive diagnosis and by then I could barely walk. My fingers and toes curled up,and having been an active,athletic person all my life (I am now 74),it was depressing,to say the least,that I could no longer swim my half-mile a day,hike,etc. (I windsurfed till I was 60). I am a retired teacher and of a philosophical bent,and I have learned a lot about life and myself. The good news is that after treatment with IVIG,I improved,and now walk,garden,volunteer,tutor,etc. It took about a year to really see the difference,but now it has been ten years and although my hands & toes have slowed down a bit,I continue with the IVIG. I have been told to rest more,but I like being active and engaged–it’s a positive trade-off. My heart goes out to your husband–I send loving thoughts and encouragement. He (and YOU!)are not alone. Helena

    • Thank you so much for your comment! It is a very rare condition but we are learning to cope and just live life as “normal” as we can. Loving thoughts your way xx

  3. Nancy – I am very close to a diagnosis like your husbands. My symptoms are also symmetrical, but in almost every other respect it appears to be MMN. How rapid was the onset of the disease (symptoms) for your husband, and was it symmetrical from the beginning as was mine. If mine was asymmetrical in any way it was very slight as you might expect from a right or left side dominant strength pattern – as almost anyone would possess. Also – how quickly after treatment (I assume IVIg) did your husband begin to recognize a benefit? Thanks, Ron

    • Hello! My husband’s symptoms from the start were not hugely significant, but he knew something was wrong. And it did get worse, struggling with stairs and gripping were big red flags. It took MONTHS before ONE dr took him seriously enough to do some tests, and then the hospital called and asked him to come in asap. It was a lengthy process that first year. After a year of those first symptoms, it did progressively get worse. We were living in England and he only got treatment once every 3 months, but by the end of those 3 months he couldn’t even stand, or use his fingers, the paralysis was heartbreaking. A monthly treatment makes so much more sense! To keep stable. Apparently a number of neuropathies all have the same treatment, yes IVIg. After he gets his treatment, it does take a few days for the full effect. Once in a blue moon he gets bad migraines, the treatment does make him very tired as well. It has been 4 years now and one thing for sure, as my husband has improved his health, some strength has come back. Whatever muscle is left, it is good to keep it strong! And the weightloss has helped too, being over weight and restricted with neuropathy is very difficult. I have always been an advocate of health but even more so now! Good luck and hope you get a firm diagnosis!

  4. Nancy, I can’t help but read your article and see that you are going through something hard. My family is praying that my dad’s diagnosis changes from ALS to MMN. Please see the benefits in MMN over other diseases in that family. You guys are lucky.

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