Discussions By Condition: I cannot get a diagnosis.

8 years later...

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: disciam
  • September 19, 2009
  • 04:52 AM

PLEASE HELP! I am a 28 year old woman with a very serious UNDIAGNOSED condition that started when I lived in Brazil 9 years ago. Before then I was the picture of health on a University scholarship to throw the Discus and Hammer. Even as I sit here I'm hunched over, ticing and having to take deep breaths. Just for typing! Sometimes I’m perfectly healthy/normal. My symptoms are episodic and I can't predict when they will come or go.

1. Severe weakness throughout my body to the point where if I can walk I look like a person w/ cerebral palsy. It has been so bad that all I can do is crawl on the floor on my knees and elbows. It is always worse on my right side. And when it started my right eye lid would droop and open on its own will.
2. Tics that mostly affect my right arm and my head that twitches toward the right. I can control them or hold them off but if I do the next one is just bigger and can affect my whole body (Legs included)
3. Difficulty breathing. I have to take deep breaths if my episode is bad enough. Very hard to teach my class (my career is teaching) with my symptoms. In fact, this is my second day home this week and I only have 3 more sick days left in the school year. HELP!


Any elevated emotion affects symptoms
Lack of food can start an episode…sometimes eating will dissipate them too.
One time after eating a super rich chocolate cheese cake I went into an episode.
When a dentist gave me a shot to numb my mouth I went immediately into full blown spasms/episode that lasted about an hour…I was NOT nervous or anxious AT ALL
I was just diagnosed w/ severe sleep apnea…haven’t got my CPAP yet, but hoping it will help, or completely be the answer!

Those are the main symptoms. I used to have others including shocks but they have lessened and been replaced w/ the tics or jerky movements. Once again, I HAVE NO PAIN except emotional. I've been tested for MS, Myasthenia Gravis, Gullaine Barre, Huntington's, Stiff Persons Syndrome (which my blood was 99% match, but my symptoms are nothing like the syndrome), etc etc etc. PLEASE...HELP! 8 years of this is too much and I can't possibly be the only one suffering from this thing. I'm out of money for doctors and almost out of faith to try.

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