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  • Hi,

    I know it has been a long time since you were on here. I have an onset of symptoms that is very similar to what you had.... please tell me what you have learned. I have 4 little kids and cannot take care of them properly because of this...

    Thank you!
    Hi there. They are thinking it is some kind I myotonia, whether congenital, para or neuro; we won't know until we get results back from genetic testing. If the genetic testing comes back clean for myotonia, it may be the extremely early stages of ALS, early onset, slow progressing.

    How about you?
    Not doing well at all going in for another MRI soon! How are you?
    Ssorry I have not been on much I am having very bad vertigo!
    Yes they are going to do a muscle biospy on me. Vitamins are the only treatment for mito. I am just so tired all the time. The ivig was not good for me made things a little worse. I guess it was to hard on my body.
    Not feeling great had a Neuro appt today. Sorry your not feling well. Yes I have had gi problems but they seem ok now. I am having constant interl vibrations nd dizzy spells right now! Not fun I also got diagnosised with nystagmus today.
    They want me to goto Georgia for the muscle biospy. My amino acid and lactati paytive (sp) ratio was all off! I am on coq10 and carnitine vitimans right now just stareted last week so we will see. The funny thingis my daughter when she was 2 was thougth to have mito as well and my aunt mom's sister was just diagnosed this week as well with mito.
    Sorry I haven't gotten back to you been crazy the biopsy was not mine they read me someone else. Now they think I have mito disease and started me on vitimans the ivig was not good to me my skin has been on fire and dry for months since receiving it. How are you?
    Not good just had skin biospy done on face vasulitious.problem is allergic to stroids not sure how to treat.
    I would really like to talk on the phone if you would be comfortable with that. It is ok if not just having a really hard time. They had me on steroids for 4 days with no help. Something happend after my ivig my skin is tight burning and itchy and won't go away even with the steroids. Now after ivig my Ana is 1:80 never ever been positive till after ivig. I just don't know what to do I feel like I am dying and no one can figure it ut. I am so scared. I don't know where to go or what to do. It's like I take something to help one thing then something else happens. I need god to give me answers or lead me to a doctor that can help me I fear the worse.
    Well they will not be giving me ivig due to the raction I am having now my Ana is up after the ivig so I don't know what is next I was just in the hospital for the last 6 days no improvement on iv steroids. If my Ana goes to1:360they will start plasmapahrisis.
    Hi just checking in went to the autoimmiune doctor what a wast of time I have to find a new one. How r you and how was your thanksgiving?
    I will be starting ondec7th and will be getting it monthly. They are going to switch product they think I am having an allergic reaction to it.
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