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Cavernous Hemangioma of Brainstem

 

Alicia Yoos - January 14, 2008

From:"Alicia Yoos" aliciayoos@yahoo.com
Sent: January 14, 2008

I am a forty year old mother of three. I was misdiagnosed with MS 11 years ago, which was frightening. I lived with that dignosis for 18 months, until my docs got it right. I was 30, pregnant and not expected to survive long. Thankfully they were wrong.

I am now nearly healthy with few "relapses". I have had several bleeds, with horrible neuro side-effects. The drugs available to us are few, and most have awful side-effects. Neurosurgery is not an option.

I have learned to monitor my activities and watch my body for signs/symptoms. I have some tingling in left extremities with sensory loss, memory and word loss, "ice pick headaches" and other odd symptoms.

I have found that by avoiding straining and excessive heat/humidity I fare much better.

Quality of life may become challenged, but with patience and diligence they can be overcome.

I would welcome questions and comments, whether they be from patients or docs.

Good luck to all,

Alicia Yoos
Washington State