Myoclonus Survey Part 2
Submitted by deb on Sun, 06/26/2011 – 22:39
Description of Myoclonus
Here is a description of myoclonus by Joseph Jankovic, M.D: Myoclonus describes a symptom and generally is not a diagnosis of a disease. It refers to sudden, involuntary jerking of a muscle or group of muscles. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Myoclonus sometimes occurs in response to an external event or when a person attempts to make a movement. The twitching cannot be controlled by the person experiencing it.
In its simplest form, myoclonus consists of a muscle twitch followed by relaxation. A hiccup is an example of this type of myoclonus. Other familiar examples of myoclonus are the jerks or “sleep starts” that some people experience while drifting off to sleep. These simple forms of myoclonus occur in normal, healthy persons and cause no difficulties. When more widespread, myoclonus may involve persistent, shock-like contractions in a group of muscles. In some cases, myoclonus begins in one region of the body and spreads to muscles in other areas. The brief positive muscle contractions of myoclonus are often accompanied with sudden, unexpected inhibitions of muscle contraction, or lapses of posture. This phenomenon, termed negative myoclonus, makes standing, walking, reaching, or grasping objects very difficult.
Survey Questions
Place your cursor behind the question and type in your answers. Use an X to answer the yes or no questions. If you don’t know the answer choose DK.
1) Name: (suppressed for publication)
2) Birthdate:
3) Sex:
5) Age your episodes of PP began:
6) Is there a family history of PP? Yes: No: DK:
7) Has your genetic mutation been identified? Yes:______ State Mutation: No:_______
8) How do you respond to potassium? Do symptoms: Improve: ______Worsen:_____ No change:_____
9) To what extent are you affected during your *worst* attack of PP?
Mild weakness which interferes with but does not prevent movement:
Legs:__ Arms:__ Feet:___Trunk:___Face:___Breathing:___
Moderate weakness which makes independent movement difficult:
Legs:__ Arms:__ Feet:___Trunk:___Face:___Breathing:___
Severe weakness which makes independent movement impossible:
Legs:__ Arms:__ Feet:___Trunk:___Face:___Breathing:___
10) Have you ever lost consciousness during an episode of PP? Yes: __No:___
11) Have you ever lost consciousness due to oxygen deprivation? Yes: ___No:____
12) How do you respond to a carbohydrate load (starchy foods, sweets)?
Do symptoms: Improve: ____Worsen:____ No change:____
13) What is your serum potassium level when you are at your best? ________
14) What is your serum potassium level during an attack? _________
15) Do you have cardiac abnormalities during attacks? Yes: ___No:____ DK:____
16) If yes, what type? Arrhythmia:___ Tachycardia:___ Bradycardia:____ Long QT:____ Other:_____
17) Do you experience myoclonus? Yes: ____No:____
18) If yes: At what age did your myoclonus begin?
19) Do others in your family experience myoclonus? Yes: ___No:___ DK:___
20) If you have myoclonus: What triggers your myoclonus?
Movement or the intention to move: ____
Stimulus such as light, noise, startle:_____
Fluctuations in potassium; i.e. weakness:____
21) When is your myoclonus most likely to occur? (Check as many as apply)
When I am *not* having an attack of PP:____
Just prior to an attack of PP:____
When I am in the early stages of a PP attack:___
When my PP attack is fully established: ______
When my attack of PP is resolving: _____
After an attack of PP is finished:______
22) Have you ever experienced myoclonus *while otherwise paralyzed*? Yes____ No_____
23) Which muscles are involved in your myoclonus?
Arms/hands:___ Legs/feet_____Trunk______ Face_______ Voice______ Generalized_____
24) When you have myoclonus do the muscles jerk in a repetitive pattern or rhythm, “jump, jump, jump”, or are the jerks random and without a regular pattern? Regular pattern: _____Random_____ Both____
25) How long do your attacks of myoclonus last? State length of time________
26) What, if anything, helps resolve your myoclonus?
27) In 200 words or less, describe a typical episode of your myoclonus.
28) Have you ever had an electroencephalogram (EEG) to detect abnormalities in the electrical activity of your brain? Yes ______No_______
29) If you have had an EEG, was any abnormal activity found, and if so what?
30) During episodes of paralysis do you have/have you had any fluctuations of serum sodium levels?
Yes______ No______
30a) If yes, what were the levels?
31) During episodes of paralysis do you have any fluctuation of serum calcium levels?
Yes_____ No_____
31a) If yes, what were the levels?
32) Have you experienced an acid/base disturbance during episodes of paralysis, i.e. metabolic acidosis or metabolic alkalosis? Yes ______No______
32a) If yes, which did you have and at what level?
33) Do you agree that the information you have given in this survey may be compiled and used to prepare a report on myoclonus among patients with periodic paralysis? Yes ______No______
34) Your identity or identifying characteristics will not be included in the report. However, should there be some interest from a researcher we may ask participants of the survey if they wish to be placed in touch with the researcher. Would you agree that the list manager may contact you to ask if you want to participate? Yes _______No______