vickim
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  • 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 :)
    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.
    Very interesting. I’ve been on cipro and Levaquin for many years before my symptoms started. I’m 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.
    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?
    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?
    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!
    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!
    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
    Sorry for delays, I don't get into my stand alone computer alot and this is my account here. I can't remember my password and have tried over and over and over to get it to work. I had to come up with a NEW I.D. (a no no I know) and cannot do pms at all, if ever again. I appreciate your concern. Nothing is better, if anything it is much much worse. I may try to do a pm here for you if o.k. at some point soon. I go back to St. Louis 04 07. Hoping things are fairly well for you.
    Hi Vicki,
    Sorry to read that your health issues are flaring up again. Also, I hate to hear about your dad. I will be praying for you and your family. When things calm down for you if you are on facebook you can always add me. There are to Kim Deters. But, I'm listed as Kim Stephens Deters. Hugs, Kim
    Hi Vicki,
    Is the pub thread open anymore. Probally, alot of the members aren't able to post anymore. How are you? I'm doing well. Getting ready to move into my dad's home. I wish he could live there instead of me. But, I am excited about getting out of my apartment. More room for the kids and a nicer neighborhood.
    We had a great visit with my dad over the Columbus day weekend. He's hanging in there but has hardly any use of his arms, hands, or legs. Take care, Kim
    Hi Vicki,
    How have you been? My dad turned 81 this past Friday. My husband (or whatever) is taking the kids and I to see dad over Columbus weekend. The kids have four days off because they have a teacher's institute. It's so hard for the twins to go during the school year because they get so far behind. I'm going to try to go every few months if I can afford it. I haven't been on here as much. I have been spending alot of time on line on a support group for separated and divorced people. It helps to talk to others who understand. Take care, Kim
    Hi, I have been on here once in a while checking in on everyone. Sounds like you have a nice weekend ahead of you, hope you have a great time. We are done camping for the year and we are winterizing it this weekend. Doesn't seem like summer is over, I love fall but not what comes after that!!

    Love you too!!
    Dana
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