- Paramyotonia congenita
- Interviews
ocp toronto's interview
How did all start?
I was born with it. My mother suffered from it as well. My sister and now my nephew has it as well.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed by Dr.nGillian Gibson. VGH She could see through the tests I did indeed have this defective gene.passed on by mother.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Just this, considering it has only been accepted by the collage since 2008 I have not been treated. At first I was told benzodiazepines would help me a great deal for immediate relief. It is a fact after trying many other methods having clonasapam on hand has been a god send. Given the fact I had suffered quietly for 40 years I can't tell you how different I feel when I have that medication. My primary health physician doesn't want me o be on a benzo at all and she doesn't care what I say or others with the same infliction that have found benzodiazepines very helpful and also the only reason he has kept his job.
What has been the most useful thing for you so far?
Benzodiazepines and fitness.
What have been your biggest difficulties?
Just being motivated to continue living is my current difficulty.
How has your social and family environment reacted? Have your social or family relationships changed?
I don't have family or friends now.. I have become terrified of running into someone from my past because I have been spending most of my time in bed. I rarely leave the house.
What things have you stopped doing?
Everything. Even feeding myself. I've given up because I can't seem to find a doctor that will listen to me.. aroraphobia poor spelling.
What do you think about the future?
Indont
Finally, what advice would you give to a person in a similar situation?
Keep trying to find a medication that will help. Also diet.
