I AM URGENTLY TRYING TO MAKE CONTACT WITH PEOPLE WHO HAVE A DIAGNOSE OF PARAMYOTONIA CONGENITA.
I AM 55YRS OF AGE AND IN HERITED MY DISEASE FROM MY LATE MOTHER.WHICH FOR ME HAS BEEN SEVERELY DISABLING,I AM CONFINED TO AN ELECTRIC WHEELCHAIR AND AM SOME DAYS NOT EVEN ABLE TO LIFE A PLATE.
I URGENTLY NEED TO KNOW WHAT MEDICATION OTHERS ARE TAKING FOR THIS CONDITION.
IF YOU CAN HELP PLEASE,PLEASE CONTACT ME AS SOON AS POSSIBLE.AS THE DRUG I HAVE BEEN TAKING FOR THIS
PROCAINE AMIDE IS BEING DISCONTINUED.
VERY MANY THANKS,
BENITA. U.K.
As you'll see, you need to be very careful with medications since different types of PMC can have different reactions and what works well for one person may make you worse.
I would suggest that you get on the HKPP mailing list for the Periodic Paralysis Network. You'll find other people with PMC who can help answer some of your questions (myotonia congenita is a different ion channel disorder so the medications and treatments are different).
JAN,
THANK-YOU VERY MUCH FOR REPLYING SO QUICKLY TO MY REQUST OF CONTACTING PEOPLE WITH PARAMYOTONIA CONGENITA.
I AM A MEMBER OF PPA AND HAVE RECENTLY BEEN IN CONTACT WITH THIER ASK THE EXPERTS TEAM.AND JACOB LEVITT MEDICAL DIRECTOR OF PPA GAVE ME THE NAME AND E-MAIL ADDRESS OF A SPECIALIST IN LONDON WHO SPECIALIZES IN MYOTONIC DISEASES.AND I HAVE MADE CONTACT WITH HIM AND AM NOW WAITING FOR MY NEUROLOGIST TO WRITE A REFERRAL LETTER.
I SHALL BE SO RELEAVED IF I CAN GO AND SEE HIM.
I TRIED CONECTING TO THE WEB SITE YOU SUGGESTED AGAIN,JAN BUT NO LUCK UNFORTUNATLY.
I ALSO USE THE M.D. U.K. SITE,M.D.A. U.S.A. WHICH IS VERY HELPFUL TOO AND OCCASIONALLY THE WORLD MUSCLE SOCIETY SITE.
I WOULD STILL VERY,VERY MUCH APPRCIATE HEARING FROM PEOPLE WITH PMC.
THANK-YOU ALL FOR YOUR HELP AND SUPPORT. BENITA.U.K.