I will preface this with a word of personal experience. I tried LDN 1.5 mg, orally, and found it reduced my pain by 80%. My doctor and I decided then to increase the dose to 4.5 mg daily, which immediately caused stomach pain, cramping and diarrhea. We should have left well-enough alone. We consequently tried…
You can watch Eric’s Ted Talk here: https://www.ted.com/talks/eric_dishman_health_care_should_be_a_team_sport/transcript Or read the transcript below: When Eric Dishman was in college, doctors told him he had 2 to 3 years to live. That was a long time ago. Now, Dishman puts his experience and his expertise as a medical tech specialist together to suggest a bold…
This one page form can be adapted to your needs. Erase what doesn’t apply and add in your own information. List your ideal serum K+, blood pressure, heart rate and other important health parametres. List your diagnoses, any drug allergies, your meds and doses, your surgical history, any other important medical information. Fold it and…
Management Tools Medical History Form Some Excellent Tracking and Management Tools from Strongbridge Information About Treatments Starting Acetazolamide (Diamox) Potassium (K+) Supplements Commonly Prescribed for HypoKPP Keveyis (dichlorphenamide) is now available to patients with periodic paralysis Strongbridge Biopharma, a company which specializes in medications for rare diseases, is now providing Keveyis (dichlorphenamide) to patients with…
Physician’s Summary of HyperKPP and Paramyotonia Congenita
DNA testing for Patients in USA “Uncovering Periodic Paralysis” is a no-cost genetic testing program offered by Strongbridge Biopharma for those who qualify. Although genetic testing can confirm a suspected diagnosis, the absence of a genetic mutation does not rule out diagnosis of the disease. The Periodic Paralysis Panel includes testing of the three genes…
Do you suspect that you might have periodic paralysis? The periodic paralyses are a rare group of disorders and there are many conditions which cause an imbalance in serum potassium. So how does the doctor tell the difference between weakness or paralysis caused by an ion channelopathy and any of the other numerous disorders, conditions…
The Compound Muscle Action Potential (CMAP) test (aka the Exercise EMG) is used to diagnose the periodic paralyses. When done correctly this test is reported to positively identify 70%-80% of patients. The CMAP test is based on the observation that patients with Periodic Paralysis have a greater than normal increase in the compound muscle action…
About 50 different genetic mutations have been identified in association with the periodic paralyses. Each of these mutations affect the structure or function of either a sodium, calcium or potassium ion channel. These mutated ion channels are located in the skeletal muscle membrane. The muscle membrane is an active, living tissue which wraps around the…
Movies are easier than reading sometimes! Muscle cells part 1 – You should know how they work! Watch this rather goofy professor explain it here. Muscle cells part 2 – the second part of the above. Action Potentials part 1 – Resting Membrane Potential: (link) Action Potentials part 2 – Voltage-Gated Ion Channels: (link) Activation…