My World Has Turned Upside Down

 I have probably had PTC about 2 - 6 yrs, unknowingly. I always had headaches or migraines, then 2yrs ago the fatigue and urge to sleep was so strong everyday after class i slept for about 3-4 hours, then still went to sleep early. My legs would feel powerless when walking or standing for more than 5 mins. I would basically be dragging myself around. I had started gaining weight like crazy, no matter what I did it would keep piling on, till I was 40lbs overweight! Then I started getting blurry vision, my eyes had issue adjusting from light to dark.

My mother is a doctor, no mean to bluff, but one of the best GP's in the country I live in, she kept wanting to send me for a CT, then came the whammy, there i was in final exams, I had learned everything to a T...went into the exam and completely blacked out, remembered absolutely nothing. I failed ALL of my courses, my parents were worried, since I usually get As and B's.After that came the stabbing sensation behind my eye,it was the most unbearable pain.

 I went for a checkup by my uncle, i listed my symptoms, he couldn't figure out what was wrong until he checked my eyes. I was diagnosed with PTC in January, a week before the new university semester would start on the 24Th. I went in for my tap the second week in February, needless to say I haven't attended classes since the first  week of school. l I went in brave for the first spinal tap thinking, this is it, after this life would return to normal. I healed quickly and looked like  I was on the road to recovery, I even lost about 10lbs. My happiness was short lived, the symptoms have started back and now I'm due for another LP.

a lot of people do not understand the disease since its not common and doesn't affect you psycially  except for your weight. Most do not even believe that anything is wrong with me. I have come to realize that this disease requires you to have a lot of faith and inner strength, I find myself ready to give up, what the sense in fighting to live so badly, that you'll live your life on bed rest with trips in and out the OR. I'd rather live than die fighting to be normal

mimi0007 mimi0007
18-21, F
1 Response Mar 13, 2010

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.