Recent content by 67698

  1. 6

    Hello! How have you been doing? Did they find any answers?? I am still doing ivig every 3...

    Hello! How have you been doing? Did they find any answers?? I am still doing ivig every 3 weeks and it is keeping me afloat, though my atrophy is slowly getting worse, though very slowly verses when it all started and I got it so suddenly... I never feel normal, though i will have periods...
  2. 6

    Hi! How have you been? Are you doing ok, did they figure out what was going on? Hope you are...

    Hi! How have you been? Are you doing ok, did they figure out what was going on? Hope you are doing better
  3. 6

    Hello, I am SO so so sorry to hear of what you and your family are going through.. I hope and...

    Hello, I am SO so so sorry to hear of what you and your family are going through.. I hope and pray y'all find some answers with a treatment.. Has he had a lumbar puncture? (look for elevated protein and other causes), has he had MRI's of his head and neck? Does his emg show signs of mnd? Does...
  4. 6

    how have you been? have they found any answers??

    how have you been? have they found any answers??
  5. 6

    I think about you lots.. how are you?? I have been declining recently.. Afraid I need Bipap at...

    I think about you lots.. how are you?? I have been declining recently.. Afraid I need Bipap at night now.. my right leg isn't working right either.. nor my pinky fingers.. .. no one knows why at this point
  6. 6

    how are you doing???? Sending positive thoughts your way, I think about you often!

    how are you doing???? Sending positive thoughts your way, I think about you often!
  7. 6

    HOw are you?? thinking about you!

    HOw are you?? thinking about you!
  8. 6

    I'm so sorry to hear that.. Vertigo? Does that go along with mitochondrial dz? Did they do that...

    I'm so sorry to hear that.. Vertigo? Does that go along with mitochondrial dz? Did they do that muscle biopsy? Gosh, I am sending prayers your way.. think about you often..they still thinking mito?
  9. 6

    how are ya doing?? They do the muscle biopsy? Thinking about you, and hoping things are going well

    how are ya doing?? They do the muscle biopsy? Thinking about you, and hoping things are going well
  10. 6

    how are you?? Think about you often... Hope things are going ok

    how are you?? Think about you often... Hope things are going ok
  11. 6

    how are you doing? Do you feel like the vitamins are helping? hows your breathing been? Have...

    how are you doing? Do you feel like the vitamins are helping? hows your breathing been? Have they discussed bipap? Hope everything is going ok..
  12. 6

    Interesting.. No real answers yet.. things really seem to wax and wane.. with some...

    Interesting.. No real answers yet.. things really seem to wax and wane.. with some progressiveness as well.. What are they saying will happen - from what I've reasearched many people with mito do pretty well.. especially adult onset.. My sibling is having very similar symptoms as me now.. though...
  13. 6

    So what are they saying they think you have?? I have had nystagmus as well.. sometimes i...

    So what are they saying they think you have?? I have had nystagmus as well.. sometimes i actually see it in my vision.. when my symptoms are exacerbated my lips vibrate - like I'm humming on a balloon.. all my muscles vibrate and shake - small shakes.. with big twitches too.. no cramping...
  14. 6

    whats going on?? Did they do a biopsy? I wish I could private message you! How are all of your...

    whats going on?? Did they do a biopsy? I wish I could private message you! How are all of your symptoms? how are you handling it all? I am doing alright.. I have a lot of burning paresthesia symptoms right now - when I get exposed to sun it exacerbates it.. and I am really worried I need...
  15. 6

    How have you been feeling?? Thinking about you!!

    How have you been feeling?? Thinking about you!!
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