Myoclonus Survey Part 2

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______

 

Tags:

Section: