my mom and other family with possible mito

May 27, 2004

Hi guys,

I just wanted to ask this- once one family member gets the mito dx- what

about others with symptoms? I am the most affected in my family of course- that

is

how I was the first to be diagnosed. But now that I've got a clear mito dx,

what about the rest of my family? My mom seems to be having more and more

health concerns- she's 57 now and has been pretty healthy other than obesity and

probs with hypoglycemia alot of her life. Well, the past 3-4 yrs shes started

having probs with fatigue, leg pain, and GI disorders. I also think she might

have dysautonomia like me due to low BP, some of her temp regulation probs and

excessive sweating. The past few months she has started to have more symptoms-

fatigue worsening, more muscle pain, dizziness, significant weight loss (15

lbs in the past 2 wks), nausea/appitite loss, new headaches and a few other

things. Of course some of her drs blame alot of these symptoms on her being

obese.

I know that it might be affecting the symptoms but not the cause. They also

seem to be happy she's losing weight. She decided to go on the south beach diet

now since she's not hungry to start with and I think that the high fat low

carb diet is making her symptoms worse. Since I was diagnosed with mito now and

I've told her I want her checked, she seems to not wanna think about it. She

does want to believe my brother's problems are due to it though (hes got alot

of behavioral issues- ODD, ADHD and suspected bipolar and he also has a hard

time with infections- causing headaches and excessive fatigue/pain, etc and with

mild cyclic vomiting.) I've got other family members (my aunts, cousins, etc)

that also have mild symptoms- mainly dysautonomia symptoms, GI disorders and

developmental/learning disabilites. I just dont know what should be done- I

guess this is a question to ask my geneticist next week but I thought I would

ask how those of you with other family with mito- how did they get diagnosed? I

guess if its a known mutation through blood its pretty easy but since they

havent found my mutation yet but suspect a MELAS variant- guess its just wait

and

see. There is no other way other than a muscle biopsy for them right? Just

thought I would ask- thank you for any responses.

take care,

Adrienne

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