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Old 11-06-2012, 02:41 PM   #1
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Feeling alone

I was recently diagnosed with CPEO and feel crappy all the time. I have no energy, I don't see we'll, I have headaches daily and sometimes I think my family and friends don't believe how badly I really feel. It's hard to find someone to talk to.

 
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Old 11-06-2012, 03:56 PM   #2
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Re: Feeling alone

Sorry you feeling bad feel like that sometimes also, i think they care they just don't know what to say I suppose because they don't feel what you feel. I'm knew here also. What does the initials stand for I'm clueless learning.

 
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Old 11-06-2012, 04:15 PM   #3
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Re: Feeling alone

Quote:
Originally Posted by Sand50 View Post
Sorry you feeling bad feel like that sometimes also, i think they care they just don't know what to say I suppose because they don't feel what you feel. I'm knew here also. What does the initials stand for I'm clueless learning.

 
Old 11-06-2012, 04:17 PM   #4
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Re: Feeling alone

Hi thanks for responding. CPEO stands for Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Tell me about you, if you wish

 
Old 11-06-2012, 04:38 PM   #5
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Re: Feeling alone

Hi, I felt like I got electrical shock at work a year ago now, to actually hearing grinding electricity in room following week, I'm a hair stylist there was actually water, under mat I didn't know, if this isn't related hope to soon figure this out, dr is running test, I thought I had escaped something really bad until 20 min. Later violent muscle spasm for doc the same day in small town said could be back, after x rays were normal and meds. I still hurt, for at least 14 days thought I was ok after pain left, decently noticed I felt very weak, dropping things like crazy didnt feel balanced, talked to dr and he went straight to the heel I felt this electrical sensation in, for him to tell me i had pretty significant numbness in ankle and dorsal area, so MRI was normal, so he said sometimes mri isn't conclusive enough so with his findings, he would be a fool not to do the nerve conduction test , which we did, week ago, so numbness is more than I thought, fore arm numbness from ulnar nerve entrapment in left elbow , ankle big toe, this goes into calf, numbness, and thigh, that's all we talked about but wanted me to get ct of abdomen which was normal, dr said I have L5 radirulopathy on the left, with ulnar nerve entrapment left elbow, all I know till I go back on nov.16 weird I feel like I'm hanging in but wonder how far this may go .

 
Old 11-06-2012, 07:56 PM   #6
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Re: Feeling alone

Quote:
Originally Posted by Silv View Post
I was recently diagnosed with CPEO and feel crappy all the time. I have no energy, I don't see we'll, I have headaches daily and sometimes I think my family and friends don't believe how badly I really feel. It's hard to find someone to talk to.
Hi there, I have had cpeo for about 10 years now and know exactly how you feel. Just being able to see takes so much work constantly and the general fatigue is debilitating. I don't think most people understand what this disease does to one's ability to function. I have had to learn to accept my limitation and try to wok around them- fighting your body is futile. Hope I have validated some of your experiences and feelings.

 
Old 11-06-2012, 08:07 PM   #7
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Smile Re: Feeling alone

Thank you for your kind words

 
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