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Re: "live the moment"

Hi William!

There is a form of muscular dystrophy that involves myotonia called Myotonic Muscular Dystrophy, but it is not the same as Myotonia Congenita.

People with myotonic muscular dystrophy, on average, tend to have far more severe weakness and muscle wasting, shorter life spans, and the disorder can cause cataracts, kidney problems, brain atrophy, and heart problems, to name a few things. I think their myotonia is generally less severe....or they tend to not acknowledge it as much for some reason.

Thankfully Myotonia Congenita doesn't seem to be nearly as life threatening! Our most prominent symptom is usually the myotonia itself and it is not associated with any vital organ issues.

Myotonia Congenita is in a group of disorders called the Non-Dystrophic Myotonias, but it is still one of the disorders that the Muscular Dystrophy Association provides services for.

I know what you mean about wishing the disorder was more visible, and having to always be aware of your surroundings. Due to the severity of my myotonia growing up, and the fact that I can usually feel when I am going to have a problem with my muscles locking up, before I actually move, I tend to be a lot more calculated in my movements than others. This has served me well in laboratories I've worked in!

Type of Myotonia: Becker

Country: USA

Re: "live the moment"

Hi Jenna,
Thank you for this information. I think this forum is great for that. For me personally it is amazing to share our stories like this. I have always felt alone in dealing with this. Even the medical profession in my experience do not know how to deal with it. For instance. I had to have back surgery about a 1 1/2 years ago. It was supposed to be in and out the same day. They ended up paralyzing both legs from the knees down and was in the hospital and rehab for over two month's. I later found out that certain anesthesia used in operations have drastic side effects to Myotonia Congenita. As shown in a study by two doctors from Norway. You would think that the medical profession would be aware of this and warn us about this. Or do their research before putting us under the knife. To this point I have not received any real answers to what happened except they tell me that there was some access bleeding that contributed to me becoming paralyzed. All the heads from the hospital have apologized for what happened not only for the paralyzation but the treatment I received. They should have sent me to a rehab facility that specialize in neurological and muscular disorders. Instead I was placed in general rehab and they had no clue how to handle me and basically tortured me.
Thankfully because of my will to do so I can walk again but it is difficult. So what I am trying to say is be vocal with the medical profession explain best as you can to them what it is we have. Do not let them just google the disease and be fine with it. get the facts from them so you know they have all the right information. That is what happened to me.

Type of Myotonia: Myotonia Gongenita

Country: Canada

Re: "live the moment"

William, sorry you had such an awful experience. You're right, we have to be our own advocates and make sure our doctors (especially anesthesiologists) have the correct information. I took the anesthesia protocol from the website with me when I was in the hospital a few months ago and they put it in with my records.

However what you're describing is not an anesthesia reaction. Apparently they damaged the L-5 (5th lumbar disc) nerve at the spine and this affected the peroneal nerve. If you haven't already done so, it's worth running past a medical malpractice attorney. Hopefully you won't develop foot drop and other problems in the future, but it would be good to have someone review the records.

Jan

Type of Myotonia: Thomsen's

Country: US