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Re: How much of this might be psychological?

Suzie:

They are treated in similar fashions, but as Jan pointed out, not exactly the same way. There are enough differences such that treating treating one as if it were the other may result in unoptimized treatment for the individual and cause them to have to endure things they don't have to endure.

Personally I've found that knowing exactly what I have down to the mutation has had a big positive impact on me because I feel I'm no longer in the dark as to what to expect and how to best manage my symptoms. I also like being able to research my specific mutations. It's also enabled me to correlate some symptoms I have that are not in the literature, with two other people with the same mutations I have. In the future, I expect there to be mutation specific treatment options.

Additionally, some people have more than one myotonia causing disorder. Cases of people with both chloride channel and sodium channel myotonia have been documented, as well as people with myotonic muscular dystrophy and chloride channel myotonia. Sometimes mild forms of myotonic muscular dystrophy are mistaken for MC until the later decades of a person's life when more multi-systematic symptoms manifest, and then there are more unusual disorders that can cause myotonia like symptoms. A few people with myotonia have their results come back negative for any known myotonic disorder, and the cause of their symptoms is still a mystery.

If you feel knowing exactly what type of myotonia you have will benefit you in some way, then I would ask to see another doctor. Any doctor can actually order the testing. The issue is paying for it. If you need to see an MDA doctor to have the MDA pay for it, then request to see another MDA doctor. If you have private insurance, then you can get the testing through your primary care physician. They just need to fill out the Athena Diagnostic order form, check the right box, and you go get the blood drawn and they ship it. A few weeks to a month later you should have the results.

Type of Myotonia: Becker

Country: USA

Re: How much of this might be psychological?

I have Becker's MC which is known for transient weakness in joints like the knee and elbow. I have had experiences similar to yours Suzi where I am walking across an open space and suddenly feel like I cannot take the next step.

In reflection it seems to me to be caused by anxiety experienced by myself, which causes adrenalin to be released into my system and that in turn aggravates the MC. At the back of my mind I am aware that I could suffer a knee joint giving away or my muscles simply seizing up; this is the source of my anxiety felt most accutely when in the presence of other people - especially strangers.

I've developed coping strategies to help, they are not perfect, but I have not had an actual fall in many years so they must be good for something! The key is to remin relaxed. I use a walking stick to let others know that I have a mobility problem too, it seems to lower their expectations whilst, in most cases, increasing their consideration for me.

Type of Myotonia: Becker's

Country: England

Re: How much of this might be psychological?

To add to that...it occurred to me today that I usually have more of a problem in situations where I feel I need a finer degree of control in my load bearing muscles, ie my legs. If you imagine the degree to which most people can contract their muscles ranged from 0-10 with increments of 0.1, imagine in my legs, for less than mild movements, I only have increments of 3. I believe that at any given time there are also 4 abnormal phenomena occurring in my muscles.

1. Myotonia (Stiffness/cramping: due to poor chloride conductance)

2. The warm up effect (The illusion of normal function: due to metabolic poisoning?)

3. A depolarization conduction block (Weakness: Pathology unknown)

4. A compensation mechanism against the depolarization block (Something about an abnormal pattern of muscle fiber activation)

This collimates in strange things that only I and the likes of others such as my self can understand.

Type of Myotonia: Becker

Country: USA

Re: How much of this might be psychological?

I have the same thing, especially crossing big, wide open spaces. I figured it out that it's all anxiety. I get so worked up that I have panic attacks. As much as I try to tell myself not to stress about a situation, I still do, so it totally affects my ability to get around successfully. Seems to me that it comes in waves as well, as sometimes I'm "OK" and other times, I get so anxious that I am literally pouring with sweat as a result. Sometimes the cane wouldn't even help me because I was so worked up with the fear that I was going to fall in the middle of a big street or in front of people and ultimately hurt myself again.

Country: USA

Re: How much of this might be psychological?

Rolma,
Turns out you may be right. I saw a new MDA Dr yesterday. She also agreed that it is anxiety. My MD just put me on an antianxiety med a few days ago for other symptoms. The MDA Dr said that it should help this also. I sure hope it does. I will let you know.
Suzi

Type of Myotonia: ?

Country: usa

Re: How much of this might be psychological?

Suzi,

were you having the same symptoms? I find that the anxiety really gets bad if I have to go around someone on the street because I'm afraid of them bumping into me and also that I'll fall in front of them. My husband doesn't understand it, but then again, he doesn't have to deal with what we do on a daily basis.

Country: USA

Re: How much of this might be psychological?

Rolma,
Yes, same symptoms. I was a a convention this weekend and had stopped to talk to someone when they left I was left standing there not being able to move I saw a friend and called him over and asked him to help me get to a seat. Thank goodness he was there.
The new meds have helped already with less panic attacks and better sleep. The MD said I would see results in two and a half weeks But I saw results in a few days.
Suzi

Type of Myotonia: ?

Country: usa

Re: How much of this might be psychological?

Suzi,

What did they put you on, if you don't mind me asking.

Country: USA