Hello Everyone, Nice to be back on line, and check and see how ever one is doing. And glad I didn't miss the "Texas Get Together". I have been without my...
I found this website trying to found out more information about PTC. My sister was diagnosed in November 2007 so we're pretty unfamiliar with the disease and...
... PTC. ... seems ... seems ... that ... hoping ... Hello, First thing is I am glad that you found this group. Secondly your sister needs to get to a doctor...
Thank you for the response. She does see an opthamologist probably once a month to check on her papalledema...right now she has it and when she told her neuro...
Hi, After going thru agony for 6 years I finally got a vp shunt put in around late April of this year. I can tell you it is a wonderful thing. I will say,...
Hello, My name is Terri, from TN. I just read your email regarding your sister. First of all, I want 2 thank u 4 taking the time to do this research. I am over...
DaShaunda, Your sister needs a new neurologist NOW. Lasix can be used to treat IH (PTC) but not at that low of a doseage. When you say the Diamox made her...
DaShaunda, Also, this is EXTREMELY imortant! Tell your sister to STOP TAKING the Tramadol. Tramadol has a warning and should NOT be used by anyone with IH/PTC...
I agree. Stop taking the TRAMADOL RIGHT NOW. That has to be one of the worst drugs I have ever taken as far as making my IH symptoms worse. I had four...
atrophy is when something is damaged. In my case.. part of my optic nerve is damaged with no chance of repair. ... From: TERESA MEALER To: ptc@yahoogroups.com ...
Does that mean like my optic nerves have scar tissue on them, and they will never heal? Teresa Mealer vision advocate Prevent Blindness America ... From: Gina...
Atrophy is a wasting away of the body or its parts. Not so much scar tissue. Usually atrophy is irreversible. But that is a question for your eye doc....
I just wanted to thank everyone for all the information...it is much appreciated and I will pass this info on to her. She needs all the help she can get. ...
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....
Yes. Well thats what has happened with me. It doesn't do that to everyone. So dont worry. ... From: TERESA MEALER To: ptc@yahoogroups.com Sent: Monday, July...
I was very lucky on disability. I applied the first time and got it the week I was diagnosed. I am approved for 3 yrs, almost 2 down,and 1 more to go. However,...
According 2 my mobility instructor, I have only a small porthole to see in. Everything else is gone. I am in the process of putting together a meeting for the...
What is visual rehab? I don't mean to sound dumb, but I have a focus prob and have been seeing drs for yrs. I have NEVER heard this terminology b4. I only have...
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...
Somebody said Diamox is like chemotherapy...is this true in the aspect that it makes you that sick? And if so...how long does the sickness last? My sister...
... I never thought of it that way ... my answer would be, kinda. You get all the worst side-effects when you first go on Diamox, then either you get used to...
I started having chronic headaches by the 6th grade. In my early 20's I was having migraines that required trips to the ER. I started an SSRI in '94 to help...
DaShaunda,  I was on diamos for 1.5 years and it only made me a little sick for aout a month,after that I was fine with it. I know eveyone is different...
DaShaunda, You and your sister need to arm yourselves with current knowledge--the best place I know of is the Intracranial Hypertension Research Foundation...
DaShaunda, The person that referred to diamox as chemo was me. I was staying so very sick and nauseated that I asked my eye dr about it. He told me that it was...
Teri, My blindness could've been prevented, too. But I became blind because my medical group refused to authorize me to see an ophthalmologist, and once I saw...
Terri, Thanks for sharing. Many docs told me that if I lost some weight then everything would go back to normal. Meaning that I wouldnt have these symptoms and...
Dina, Yes. My mother had it (passed away), my half-brother (from my mom) has it, I have it and my seven year old daughter has it. Sucks to be in our family. ...
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