Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Just wanted to say " Hi " to everyone. This is the second mito group that I've joined. The quick story is that I have received a preliminary diagnosis (suspected anyway) of Mitochondrial Disease due to a host of symptoms. Exhaustive testing will be done on March 31st at The s Hopkins Medical Center (JHMC) in Baltimore. Thus far, my primary physician and my primary neurologist who have been treating me for SLEs have never heard of MELAS or any of the derivatives. It was only after sending me to JHMC that MELAS was suspected. We should know for sure early in April. For now, I'm just going to sit back in the easy chair and read through the archives for additional information. What I have read so far, the symptoms have me covered like a book. I'll be around and interested in what goes on here wrt this very perplexing disease. Your newest member, Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Hey, Dave. I thought I might let you know you are more than welcome in the group but also want you to know it is mostly geared for parents, grandparents, and relatives of children who are affected by Mito so it might not be what you are looking for. There are two other Mito groups for adults other than the Mitobelievers we are involved in that you might want to look into also. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16)migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral issues, SID... Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, possible arachnoid cyst, Checking In... > > > > Just wanted to say " Hi " to everyone. This is the second mito group > that > I've joined. The quick story is that I have received a preliminary > diagnosis (suspected anyway) of Mitochondrial Disease due to a host > of > symptoms. Exhaustive testing will be done on March 31st at The s > Hopkins Medical Center (JHMC) in Baltimore. > > Thus far, my primary physician and my primary neurologist who have > been > treating me for SLEs have never heard of MELAS or any of the > derivatives. It was only after sending me to JHMC that MELAS was > suspected. We should know for sure early in April. > > For now, I'm just going to sit back in the easy chair and read > through > the archives for additional information. What I have read so far, the > symptoms have me covered like a book. I'll be around and interested > in what goes on here wrt this very perplexing disease. > > Your newest member, > > Dave > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Thanks for the info Darla. Up until a few weeks ago, " mito " and " MELAS " were not part of my vocabulary. I've subscribed to a few lists mainly to collect information. I'll be lurking in the background most of the time. This group does seem to have the most members and activity when compared to others. I now better understand the purpose of the group thanks to your input. If you do see me unsubscribe in the coming weeks or months, it will not be a reflection of anyone here. All of you all will be in our prayers as we share the same experiences. Dave > Hey, Dave. > I thought I might let you know you are more than welcome in the group but > also want you to know it is mostly geared for parents, grandparents, and > relatives of children who are affected by Mito so it might not be what you > are looking for. There are two other Mito groups for adults other than the > Mitobelievers we are involved in that you might want to look into also. > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see > a photo look into what Mito looks like > Darla: mommy to > Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G- tube, > hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting, > bladder issues, wheelchair for distances, eye issues, autistic behaviors, > gastric emptying issues... > Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD, > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia, > hypertonicity, migraines, possible seizures, dumping syndrome, iron > deficiency... > Luke (16)migraines, sensory issues, & some evidence of SLE's... > Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), > Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral > issues, SID... > Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum, > encephalomalacia & leukomalacia, possible arachnoid cyst, > > > Checking In... > > > > > > > > > > Just wanted to say " Hi " to everyone. This is the second mito group > > that > > I've joined. The quick story is that I have received a preliminary > > diagnosis (suspected anyway) of Mitochondrial Disease due to a host > > of > > symptoms. Exhaustive testing will be done on March 31st at The s > > Hopkins Medical Center (JHMC) in Baltimore. > > > > Thus far, my primary physician and my primary neurologist who have > > been > > treating me for SLEs have never heard of MELAS or any of the > > derivatives. It was only after sending me to JHMC that MELAS was > > suspected. We should know for sure early in April. > > > > For now, I'm just going to sit back in the easy chair and read > > through > > the archives for additional information. What I have read so far, the > > symptoms have me covered like a book. I'll be around and interested > > in what goes on here wrt this very perplexing disease. > > > > Your newest member, > > > > Dave > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
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