Re: Welcome Marla to Barb

[Guest guest]

Barb- I can't imagine going thru cancer treatment and dealing with

Mito in the family. I wish you all the best. Thank you for the warm

welcome. I have a lot of decisions to make and everyones input has

helped tremendously. It's nice to know there are people out there

that understand. Just sad that they have to face this journey.

Marla

> Hi Marla and Jim, sorry i havent welcome you sooner Marla, and Jim

> im glad you found the group too! Marla I hope you find the answers

> your looking for, it is a hard decision at first. My youngest son

> now 9 years old was born with mito, (Jim he was diagnosed with

MERFF

> also, for years we thought it was merff, but recently with newer

> symptoms and regression, we found out its not Merff), now our

> delemia is should he have a second biopsy, Ive had 2 biospys

> neither showing what mutation, or complex. Just ragged red

fibers,

> and screwy blood work and the same for my son Matt. We finally

did

> conclude that we woudl allow Matt to have a second biospy, the

> specialist are looking for MELAS w/complex 1. which in hine site

> makes perfect sense for both of our symptoms and lab work.

> Unfortunetly i was recently diagnosed with cancer and must deal

with

> that issue, and wouldnt be able to be there for Matt the way a mom

> should if we went ahead with biopsy. sure our family would be

> there, my husband and older two children now adults, his nurses

too,

> but i have a need to be there so we have put the biopsy off, as it

> wont inprove his condition, but would better inprove treatment

> (expecially in the ER) that is if they reconize the diagnoses

which

> believe it or not most doctors dont. Just remember to be kind to

> yourself and dont over do things, and just take things one day at

a

> time, which is a learning process. I wish you both the best and

i

> hope you find peace and comfort here, as i have many times over!!

> Hugs to yas, new friends, Barb