vickim is on a very distinguished road

vickim vickim is offline

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Visitor Messages

Showing Visitor Messages 1 to 10 of 284
  1. monster
    10-30-2018 05:22 PM - permalink
    monster
    I messaged you so I know it’s the right Vicki. After my message it came up saying you are in the same Mito group :-)
  2. monster
    10-29-2018 07:19 PM - permalink
    monster
    Muscle biopsy was mentioned if genetic testing doesnt bring a diagnose. I have many symptoms..I think weakness, Fatigue , and my Dysautonomia symptoms are my worse. I do have other issues with possible EDS, so I’m not sure what symptoms fit which issue.
  3. monster
    10-29-2018 07:06 PM - permalink
    monster
    Very interesting. Iíve been on cipro and Levaquin for many years before my symptoms started. Iím sorry the bad days are numbering your good. I am on mito cafe and another group. Thank you for taking the time for sharing some information with me.
  4. monster
    10-28-2018 07:12 PM - permalink
    monster
    Hi vickie. I’m going to a university hospital also. I just did a genetic test for mitochondrial disease. I’ve had issues since 2006.
    How are you doing today? How is your progression? Has anything helped you?
  5. monster
    09-12-2018 05:18 PM - permalink
    monster
    Hi Vicki.
    I tried to send you a PM but it seems you don’t have capabilities for me to do so. I am going through testing for mitochondrial and wondering if we can chat?
  6. Ben1985
    12-02-2017 02:51 AM - permalink
    Ben1985
    I’m not good at all. Still hanging in but it’s very very hard. I’ll try to write more at some point soon. Hoping you are hanging in there also Vicki!
  7. Ben1985
    12-01-2017 03:35 PM - permalink
    Ben1985
    Hi Iím never on here but I hope your Thanksgiving was good and you are doing well also !!!
  8. Ben1985
    12-01-2017 03:34 PM - permalink
    Ben1985
    Hi! I’m never on here at all but hope things are going well for you also !!
  9. corwin
    04-08-2017 04:52 AM - permalink
    corwin
    Thank you for the answer...
    Unfortunatelly in my country there are no test for mito disease...... The doctor are telling me averytime- no als but obvious atrophy in bot hands and tongue. The whole process is symetrical and painfull which is like systemic disease...
    I will go to germany in June for more tests and i really hope for curable solution....
    The most strange thing is the muscle are shaking when stretching like whole body clonus and there movement is not smooth..... like brain signal interuption...
    Thank you agan!
  10. corwin
    03-23-2017 07:31 PM - permalink
    corwin
    Hi Vicky:)
    Greetings from another part of the world.
    Can i ask you something - I have some kind of muscular disorder. My doctors cannot find what it is. I live in small country and there not so many cases of this - in general I have generalised muscle atrophy with blurry vision, swallowing dif., tongue atrophy and hypperrefleia.
    The docs are stumbled because for 2 years my Emg were clear, so they say no als but I have obvious atrophy.
    Can I ask you about you supplement regime ??
    Thank you very much

About Me

  • About vickim
    What's your relationship with ALS/MND?
    I am a friend of someone with ALS/MND.
    If diagnosed, when was the diagnosis?
    03/2012
    City
    aaaa
    State or Province
    hmm
    Country
    US
    Biography
    I have mitochondrial myopathy
    Occupation
    disabled
    Interests
    fishing camping needle work reading
  • Signature
    Vicki

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  • Last Activity: 11-15-2018 05:25 PM
  • Join Date: 09-20-2012

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