Hello Dorrie:

Well, I've got to admit, I'm just starting out on this journey myself but what I do understand is that when the condition develops in childhood it definitely is a much more serious condition than the form that initiates in adulthood. Originally, when I was first being diagnosed they thought I had Myasthenia Gravis, as the symptoms I was presenting with were very similar to MG. I was sent to the Neurolmuscular Clinic in London, Ontario ( Canada) to see a Dr. Nicole who is apparently one of or "the" authority on MG in N.A. ... his diagnosis was that I did not have MG but through further genetic testing, came to the conclusion that it was Myatonic Dystrophy Type I ( there are 2 types but I'm not entirely certain what the exact difference is between the 2 types ): Adult Onset. At the time I was presenting with very serious symptoms but we didn't realize that my potassium levels and the electrolytes in general were also way out of balance and once we got the potassium levels back up to normal range the severity of my symptoms did abate.

Unfortunately the complicating factor for me was that I was also contending with a work related injury that involve damage to 3 cervical vertebrates and herniated discs between c4, c5 and c6. I was having mobility issues related to the spinal chord injury that were not responding to treatment ... that's when the doctors began to suspect that something else was wrong ... the MD was the complicating factor. As a result we missed the onset of the MD and I've lost a lot of functioning that could have been avoided had we caught the MD. As the doctor explained to me at the time ... "If you got to have a choice between what types of dystrophy you were going to have ... you'd want the Myatonic variety over Myasthenia." The chances of comorbid conditions like respiratory infections can prove life threatening to someone with MG but are much less likely to do so than with the MD/I. As he put it to me then that if I was careful and made sure those complicating conditions were treated promptly ( like not letting the colds and flu develop into bronchitis or pneumonia by getting them treated when I first notice the symptoms ) then Old Age was likely to be the only complicating factor I would have to worry about. Unfortunately because we did miss the onset of the MD, I've lost some physical functioning that I won't be able to regain but he did assure me that with the proper medical care and monitoring my own general physical health we can slow down further progression of the MD.

I currently rely primarily on forearm crutches for walking as my gait is off as is my balance and I have a motorized wheelchair for those days when the fatigue is bad or for use when traversing distances and on uneven ground. But I try not to use the chair as much as possible ... plan to stay on my own two feet for as long as possible.

I do have to watch the fatigue levels, over doing things physically can leave me with bad days when getting up and walking around is very difficult ( almost like chronic fatigue symptoms or Fibromyalgia type symptoms ). I tend to function better physcially and mentally in the mornings and earlier afternoons. When it gets later in the day I do notice that the fatigue settles in ... I sort of run out of steam around the dinner hour. I find that if I pace myself throughout the day and don't over do things I can function better later in the day ( when I know that I have some sort of social function to attend to in the late day or evenings ... I make sure that I have a very light day activity wise so that I'll be able to handle those social functions that occur in the evenings.

hmmm oh, how could I forget ... I also have a service dog that assists with some physical tasks. Just makes some things easier for me through out the day and when I'm out in public. She's a small dog ( we trained our existing companion animal to be our SD ... ) a cocker spaniel, and right now she fills the needs I have but they say that eventually I'd do better with a large dog that could assist with balance and mobility issues. So, when it comes time to retire Bailey we'll be looking at a larger animal for SD purposes.

Your friend may have less severe mobility/physical issues than I do as the MD is complicated by the spinal chord issues as well.

I do have some internet resources, etc that I've found when researching the MD. If you or your friend is interested I'd be glad to pass on some of those links.

Well, honestly we could go on forever in relating information but, this hopefully will help some ... I'm still looking into things myself and every time I see my neurologist at the neuromuscular clinic I acquire a little more knowledge and bits of information. As I said earlier, I'm just starting out on this journey as well. Many of the links that I have do address both types of the Myatonic Dystrophy as well as childhood and adult onset types as well.

I do hope some of that helps out your friend. We'd love to hear more of her story as well, if she's comfortable sharing some information.

Take care, hoping you're safe & well this evening and wishing you peace & comfort and resolutions to the challenges you're struggling with as well: Kefrin