Hi Shannan:
  I am so sorry that your daughter had to go through all of these problems...I rarely check my email on my yahoo account because I use my gmail account more often...However,I had to respond to your email today, because it really touched my heart...I can relate to what happened to your daughter and I really need to vent this evening...I hope that you do not mind me sharing.


   My name is Freeda. I was diagnosed in with PTC in October 2005...Like your daughter, I was not taken seriously...I think that I had PTC long before I was ever diagnosed and I have never been morbidly obese...No one who looks at me understands how doctors can say that it is my weight that caused this problem...Although I did have less fluid on my brain after losing weight, I still think that there is a missing link...I never had any symptoms until after I fell and knocked myself unconscious in the midst of fainting in April 2005, about six months before the diagnosis...And in November of 2004,I fell and lost my balance, while at work in my classroom...I had been having headaches....And the fall caused an injury to a nerve in my right leg and under my knee cap...After enduring weeks of headaches, then neck pain, then neck stiffness, ear pressure, a leaky nose, eye pressure and discomfort, I went to emergency ROOMS...All of my MRIs or CT Scans were normal...The doctors said I was suffering from Post Traumatic Stress because I had lost my father in 2005...And my love life was problematic...Well, it was a nightmare!  Of course I had problems in life but my head hurt so bad that I wanted to commit suicide or at least be put to sleep for a while...Nothing ever helped the pain, not even the Maxalt or Topamax for migraines...Even the neurologists insisted that I had bad migraines....And it took my EYE DOCTOR less than ten minutes to go into a near panic when he discovered the massive pressure on my optic nerves...My eyes were seeing patches of black and then a little bit of nothing,moving on their own...Just in time, I rushed to a FOURTH hospital, to have a lumbar puncture done....And as soon as they opened my spine, fluid went everywhere, all over the doctor and nurses, etc...I was crying and they had so much compassion because my pressure was 38 or 39 as well...And this was not the end....I have had many other lps and narrowly escaped the shunt...In 2006, I developed balance and coordination problems, severe neck pain, muscle fatigue, head and neck tremors....I have not worked since 2006 and have had problems finding work since then...Substitute teaching is going really slow and I am yet looking for work. I pray that a doctor will find out the real cause of this rare disorder...While losing weight, although, I was never morbidly obese, has helped reduce my fluid levels, I have still continued to have other problems that seem to be related. I have never been the same...Never. I pray for you and your daughter...I am grateful for every day. After occupational and physical therapy for my balance and coordination problems and tremors, I seem to manage my symptoms better...I really think that the fall I suffered caused the neck problems, which have affected the strength in my arms. Only God knows what is really going on...Take care...I enjoy painting from time to time. And I am trying to come out of isolation...PTC has changed my life in both positive and negative ways...On the positive, I do not take anything for granted anymore. After watching Mystery Diagnosis, I now know why so many doctors screw up in their diagnosis...And so that I do not make myself any sicker, I have had to let go of the bitterness and the anger...Yet, I still believe that many doctors could be more sensitive to what is going on with a patient, regardless of the test results...I no longer rely on or trust MRIs or CT Scans...I mean, I really learned the hard way, that my ultimate trust must be in God...I know that he is the only reason I am yet alive.

Sincerely,
Freeda

--- On Mon, 3/9/09, Shannan Bridgewater <shannan15434@...> wrote:

From: Shannan Bridgewater <shannan15434@...>
Subject: [ptc] introduction
To: ptc@yahoogroups.com
Date: Monday, March 9, 2009, 2:28 PM