Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 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 Quote Link to comment Share on other sites More sharing options...
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