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Old 05-16-2011, 06:01 PM   #1
jayme13 jayme13 is offline
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(female)
 
Join Date: May 2011
Location: Ontario Canada
Posts: 16
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Unhappy Chronic Progressive External Ophthalmoplegia (CPEO)

This is my first post here and I would like to chat with people who have or know about Chronic Progressive External Ophthalmoplegia (CPEO)

I am a 49 year old female who first started showing signs of hearing loss at the age of 42. because I had bactierial meningettis back in 1995 all dr. said the hearing loss was probably from that or the medication I was put on at the time. Then I started getting double vision, I thought that was from new glasses. I was also having a lot of head pressure on the right side of my head. I knew something in my head was just not right. In total I have had 4 MRI's and 1 ct scan all showed nothing. I was just living with this. I started wearing hearing aids and talking to my hearing dr. about the pressure in myhead. He suggested I see my family doctor again and request to see an ENT Specialist, I went again to a new doctor who sent me for tests, and to an ENT. The ENT said that my hearing could be related to the nacterial meningettis but he doubted it. So again back to square one.
Oct 31 2010 I hear this loud noise in my right ear and within seconds I can't hear. I faxed the ENT he called me Monday morning, wanting to see me. I went in had a hearing test, still NO sound. He tried me on Prednisone took 82 pills for about 3 weeks went back to him, still can't hear but the pressure and the headaches are pretty good. For the first time in month I am not waking up from sleeping on my right side with the feeling that my brain had shifted. He sends me for another MRI. Those results say I have a small benign tumor on the left side of my head and we will keep an eye on it with further MRI'S. He also said that I have SNHL hearing loss.
My family doctor sent me to see a Neurologis, this lady did some test and said I think you have Chronic Progressive External Ophthalmoplegia (CPEO)My eyes dont go over as far when looking side to side as they should. She said this can also cause hearing loss. She sent me to an opthamologist, he did some test and said he is pretty sure that is what i have. I am now waiting to see a neuro opthamologist as this specialist and the Neuroligist want me to have a muscle test done. I do ave weakness in my arms and legs. So far I have No droopy eyes. I am still suffering with the headaches, they seem worse if I get the least bit stressed out or tired.
Please message and share with me.
thanks
Jayme

 
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