Hi Trish,
I've had ptc for about 6 years now. Diagnosed anyhow. Who knows how long I've had it before then. I've been on and off Diamox for all these years. My symptoms would get better or disappear and my eyes would get better and then I'd be taken off the med. Then within a few months, I would be back on it. The highest does I have been on before April was 1000 mgs a day. I didn't have any real problem with it except for the hundred trips a day to the bathroom. Once I had the vp shunt surgery, I got moved up to 1500 mg a day. Now within the last week, I got moved to the Diamox Sequels at 1000 mgs a day. Now I tell you, these are more fast acting. I feel so dumb sometimes because Im in the bathroom every 20 mins it seems and its always a full bladder. Its so irritating.
I have been headache free May, June and most of July. But lately in the last week or so, I've been having horrid headaches again. And trying to get in to see the doc is like asking someone to donate part of their liver. I'm just hoping my shunt isn't acting up or anything. I don't want surgery again. Last time I couldn't move by myself for 2 weeks. But the kind I have, they just put a magnet on my head and it adjusts it (so I been told).
As for your kidney stone, I feel for you. I've had them in the past and present. I had one so big it blocked the exit from the kidney to the tubes and I had to have it surgically removed. And now they tell me I have a bunch more. But thats the least of my worries now.
Sometimes I'm so afraid Im going to lose my sight. They already tell me that I have damage and atropy in my left eyeball. Well I wish you best of luck in everything.
Gina
----- Original Message -----
Sent: Monday, July 21, 2008 3:22 PM
Subject: [ptc] Hi from a newbie
Hello - I'm a regular on other groups, but just joined this one.
I've had PTC since I was about 16 (20 years ago) but had no symptoms
until about 8 years ago. Nearly 3 years ago the Diamox gave me a
kidney stone - which saved my life. When they did the CAT-scan to find
the stone, they found an ovarian tumor. Turned out to be early stage
ovarian cancer, and I got lucky. How many people can say they're glad
they had a kidney stone?
I've been PTC symptom-free for 2 years, and I thought
surgically-induced menopause had eliminated the PTC. Wrong. Two weeks
ago I started having headaches and last week I suddenly developed a
big blind spot in the middle of my left eye's vision range. I'm back
on the Diamox as of Thursday.
I feel really crummy today - the worst of the PTC issues 'cause the
Diamox isn't really up & running yet, but also the worst of the Diamox
side-effects because it *has* started working (just not enough, yet).
I'm looking forward to meeting all of you, and talking to someone who
understands. I'm glad I thought to look for a PTC yahoo group!
Trish in WI
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