Surveys

The Golden Years - Permanent Muscle Weakness Survey

Permanent Muscle Weakness (PMW) is a late developing weakness in older patients. We're conducting a survey to see how early diagnosis, therapy and a maintaining physical fitness affect the development of permanent muscle weakness in older patients. Are you 40+ and diagnosed with periodic paralysis? Please help our research by filling in our survey. It takes about 15 minutes, and will ask for your mutation if your genetic mutation is identified.  

Survey of 64 Periodic Paralyses Patients

In July of 1998 we conducted a survey of 64 self-reported clinically diagnosed periodic paralysis patients, all members of the HKPP Listserv. The questionnaire underwent no formal validation process, nor was the data assessed by personnel trained in this field. The patients surveyed were drawn from several countries and across several racial/ethnic lines and backgrounds.

Pregnancy and Birth in Andersen-Tawil Syndrome

Part Four Case Studies - ATS

Patient #18 Two Pregnancies: ATS2;

Hypokalemic episodes Symptoms began in early childhood;

Are your symptoms worse with your menses? Yes

Pregnancy No 1: Age 32 Diagnosed at time of this pregnancy: No

Pregnancy and Birth in Hyperkalemic PP

Part Three Case Studies - HyperKPP and PMC

Patient #11 Two Pregnancies:

Familial HyperKPP and PMC Von Eulenburg Symptoms began at age of 11 years

Are your symptoms worse with your menses? No

Pregnancy No 1: Age 27

Diagnosed at time of this pregnancy: No

Pregnancy and Birth in HypoKPP

Part Two Case Studies - HypoKPP

Patient #1 Three Pregnancies:

Familial HypoKPP Symptoms began at age of 13 years with three paralytic episodes of 48-72 hour duration.

Are your symptoms worse with your menses? No

Pregnancy No 1: Age 20

Diagnosed at time of this pregnancy: Yes

Episodes consisted of minor weakness and fatigue once or twice a month. No medications during pregnancy. Maintained normal activity. Uncomplicated labour with forceps delivery of 7 lb. healthy male child three weeks short of due date.

Pregnancy and Birth in the Periodic Paralysis Patient

Part One

There is little available medical literature to guide the physician in the care of the pregnant patient who has periodic paralysis. The first part of this packet consists of abstracts and quotations drawn from current literature. But this information is limited. Because Periodic Paralysis International has a number of clients who have given birth we felt it might be helpful to survey them about their experiences. The second, third and forth parts of this packet consists of case studies of women with periodic paralysis who have given birth.

Myoclonus Survey Part 2

Description of Myoclonus

Myoclonus Survey in Periodic Paralysis Patients Part 1

Myoclonus is the 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 move. The twitching cannot be controlled by the person experiencing it.

Pain in the Periodic Paralyses

Pain Often Overlooked

Pain is an often overlooked component of the periodic paralyses. Patients who report muscle pain in association with their episodes are too often told that the periodic paralyses are not painful despite many authoritative reports to the contrary. In fact the pain which accompanies the periodic paralyses is described in some of the literature as prominent or constant.

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