FAQ/Help |
Calendar |
Search |
Today's Posts |
|
General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
Reply |
|
Thread Tools | Display Modes |
08-30-2006, 02:26 PM | #1 | |||
|
||||
Junior Member
|
FWIW, I have MELAS, one of the many types of mitochondrial disorders, also known in the short form as just mito. Thought I'd start a thread on this family of disorders in case anybody had a question about it, anybody wants to share that they are suspect or diagnosed with mito or any other reason that you might want to post in this thread. LOL
Dave
__________________
<><< . . . <><< . . . <><< |
|||
Reply With Quote |
08-30-2006, 03:10 PM | #2 | ||
|
|||
Junior Member
|
I am another mito. from the old BT but as you can see I have just asked for help on this forum for another condition I have just been diagnosed with as well.
Like many I do not have a label for my Mito. no syndrome as such found on testing. Good to see you here. |
||
Reply With Quote |
08-30-2006, 06:12 PM | #3 | |||
|
||||
Junior Member
|
Stumps,
Nice to meet you. :wave: I hope to be of assistance to anyone with a mito question. I am a group leader for the United Mitochondrial Disease Foundation (UMDF) at http://www.umdf.org and just thought I'd start a thread here. I do hope you can find the answers that you are looking for. Dave
__________________
<><< . . . <><< . . . <><< |
|||
Reply With Quote |
08-30-2006, 06:29 PM | #4 | |||
|
||||
Senior Member
|
Wheelin Rev,
Would it be too intrusive to ask you what MELAS is or what the acronym means? Too, I just wanted to say, Hi! See, we are reading your posts . |
|||
Reply With Quote |
08-30-2006, 06:53 PM | #5 | |||
|
||||
Junior Member
|
Quote:
Nope... Take a peek here: http://www.datm.org/parsonage/journal/melas_journal.htm I post for the whole world to know. LOL Dave
__________________
<><< . . . <><< . . . <><< |
|||
Reply With Quote |
08-31-2006, 12:27 AM | #6 | |||
|
||||
Senior Member
|
Thank you, W. Rev... going to visit and read .
|
|||
Reply With Quote |
08-31-2006, 06:31 AM | #7 | |||
|
||||
Member
|
Hi Rev!!
I'm Alicia, mom to four kids and myself, with mito. We live in florida, and like you, am very involved with UMDF. we are affected by complex 2 and 3, with a secondary gluteric acidemia! Travel yearly( twice a year) to a specialty center for good care! |
|||
Reply With Quote |
08-31-2006, 09:01 AM | #8 | |||
|
||||
Junior Member
|
Hi Alicia,
Nice to meet you! Were you at Atlanta this year? Are #56 and #65 yours? A forum friend of mine trails around behind Ricky Carmichael. Dave
__________________
<><< . . . <><< . . . <><< |
|||
Reply With Quote |
08-31-2006, 09:05 AM | #9 | |||
|
||||
Member
|
TeeHee! R.C rocks, as does Travis! we spent a day with Travis this April, and my life will never be the same!!!!!
Yeppers, #56 and #65 are both me, mine and ours! Each placing in the top 5 for the series finale! Needless to say, I am uber proud. I must add though...many a prayer, and time spent with the track chaplain saw them, as well as I through! Yes, I was in Atlanta! were you? I was actually able to attend....ALONE! I found so much to be helpful there...even found a physician here in Florida to help guide treatment! Nice to see some other mitofolks around town!
__________________
~Alicia~who feels that four kids with a mitochondrial disease is like patching the Titanic with a bandaid at times, but I say.."SHUT UP, Sit Down and ROW"... . |
|||
Reply With Quote |
08-31-2006, 08:13 PM | #10 | |||
|
||||
Junior Member
|
We were not able to attend. We'll be there if the conference ever comes to the Baltimore - Washington corridor. LOL Dave
__________________
<><< . . . <><< . . . <><< |
|||
Reply With Quote |
Reply |
|
|