Periodic Paralysis News Desk

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:
• 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:

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 so, 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 (Deborah Cavel-Greant) may contact you to ask if you want to participate?
Yes
No