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?
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.
