Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Could you tell us more about your son and what he deals with? For a while our docs thought MNGIE was our family problem. MELAS was also a big consideration. Unfortunately we have to live with unspecific Mitochondrial Disorder because of the lack of finding specifics. It has been ok for us though because our girls are getting treated with the cocktail and are also seen by all the specialists they need at this point. I would love to know the exact form, but as long as they are treated properly, I am ok with not knowing. Partly probably because I have lived with a " possible/probable " diagnosis in myself since 1990. I would love to hear more about you and your son. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Re: never get a reply,ever > > Darla, > Thanks for taking my email seriously instead of getting defensive like the > webmaster did. We are all suffering or we wouldn't be a member of this > list...but I really appreciate your support to those of us who feel a > little on the outside. > Nicki-Mom of Connor Complex IIIand IV deficiency, MNGIE > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Could you tell us more about your son and what he deals with? For a while our docs thought MNGIE was our family problem. MELAS was also a big consideration. Unfortunately we have to live with unspecific Mitochondrial Disorder because of the lack of finding specifics. It has been ok for us though because our girls are getting treated with the cocktail and are also seen by all the specialists they need at this point. I would love to know the exact form, but as long as they are treated properly, I am ok with not knowing. Partly probably because I have lived with a " possible/probable " diagnosis in myself since 1990. I would love to hear more about you and your son. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Re: never get a reply,ever > > Darla, > Thanks for taking my email seriously instead of getting defensive like the > webmaster did. We are all suffering or we wouldn't be a member of this > list...but I really appreciate your support to those of us who feel a > little on the outside. > Nicki-Mom of Connor Complex IIIand IV deficiency, MNGIE > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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