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  • I have mitochondrial myopathy which is a muscle disease. It is in the MDA family. I had a muscle biopsy and that is what gave me my answers after a 5 year search. I am now nearly 7 years into this. I have cramps and severe fatigue, headaches, weakness in my arms shoulders, hips and legs and neck. I use a cane because of neuropathy in my feet and ZI have developed a myopathic gait due to the weakness. I also suffer from dizziness. Maybe you might want to look into it. There are several other people who come to this forum with mito problems.
    I still have the tinnitus, despite the brain surgery I just had. It really tests my sanity having a loud high pitched ringing in my head 24/7. But, I try to focus on the things I love in life, like my family (and ice cream), and my brain tends to block out the ringing most of the time. I hope your CT scan goes good. Are you feeling better lately or still feeling anxious about ALS?
    They don't know why I was twitching. I still twitch, all over my body, but its usually in my upper left arm. I had Superior Canal Dehiscence Syndrome. I was missing the bone that separates the inner ear from the brain. Inner ear fluid, sound, etc leaked out of the superior canal onto my brain and caused tinnitus, hearing loss, brain fog, vertigo, dizziness and other symptoms. They don't know for sure that my weakness and twitching was caused from that. I'm thinking it isn't because I'm almost 6 weeks postop. I still twitch and my hands are still weak. I just ignore it though. Not much else I can do besides that. I'm sick of seeing doctors, would rather just live my life and be happy :)
    I have a question... Was the problem with your ear what was making you twitch?! I go in for a CT Tuesday for my ENT to look at my sinus cavity... They are enlarged.
    Thank you! I wish there was a way I could private email you... Instead of being on the forum. I'm trying to have the moderator delete my account.
    With all that being said I'm really not sure why I am telling you this. Maybe its because I feel like no one understands what I am going through right now. I feel as though I'm trapped in my brain with these horrible thoughts going through it. I look at my baby girl and I get sort of sad that I may miss something. I look at her precious smile and I worry that I wont be there to see her grow up. I know this all probably sounds super dumb, but I guess I had to vent somewhere.
    Thank you for understanding!
    Hello Goolie.
    I wanted to thank you for your response. Its crazy to think about how this fear has gotten to me. I have never in my life been like this before. Like today for instance I'm not twitching as badly but now under my chin hurts. Yes I was testing my tongue yesterday and I do have a cough (most likely post nasal drip). But it still freaks me out. It stinks being this scared. I think that I'm also scared that my youngest baby wouldn't ever really get to know me if I was sick. She's only 15 months old so If I were to have this horrible disease she would never get to know me while I'm ok. I guess that is just my fear... I want my kids to know the me I was before I started being afraif of this disease.
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