Cheri, you say there is a blood test for complex 1 def. Is this the pyruvate dehydrogenase thing?-no time to look it all up, I'm sorry and I can't remember...
245
Linda
joelinda@...
Mar 3, 1998 8:23 pm
Good for Zach and give Anne our best. Linda S. ... From: Jeannine Sawyer <sawyer@...> To: Mito@onelist.com <Mito@onelist.com> Date: Wednesday, March 03,...
246
GOLYNIE@...
Mar 3, 1999 8:23 pm
In a message dated 99-03-02 20:44:15 EST, you write: << Linda, I'm not sure if we're talking about the same thing, but I know that when my daughter (who has...
247
GOLYNIE@...
Mar 3, 1999 8:21 pm
In a message dated 99-03-02 20:04:16 EST, you write: << We are concerned that Patrick may regress as a result of the biopsy surgery or other tests. If you...
248
Stacimom@...
Mar 3, 1999 8:32 pm
Way to go, Julia!! Seeing a new eye surgeon is the best. I am slowly remembering what I theoretically learned years ago--if someone says no, they don't think...
249
Stacimom@...
Mar 3, 1999 9:29 pm
In a message dated 99-03-03 02:44:17 EST, you write: << From: "Linda" <joelinda@...> What is the difference between acidosis and electrolyte...
250
Alice Adams
aadams@...
Mar 3, 1999 10:35 pm
Yes Deb - we got your message ... From: debmitchell <kool83@...> To: mito@onelist.com <mito@onelist.com> Date: Tuesday, March 02, 1999 11:52 PM ...
251
Alice Adams
aadams@xxxxxxx.xxxx
Mar 3, 1999 11:13 pm
Well, maybe soon, someone will realize that Mito isn't so "rare" and we can finally get some help. Alice ... From: Linda <joelinda@...> To:...
252
Alice Adams
aadams@xxxxxxx.xxxx
Mar 3, 1999 11:28 pm
" He is on niacinamide( 100mg/2x'sper day) I found a no flush one at GNC. Apparentely they can get a rash of flushed look if we do not find the right kind. " ...
253
Alice Adams
aadams@xxxxxxx.xxxx
Mar 3, 1999 11:47 pm
Laura, I asked my daughter to respond to your questions herself. She is a mom with 3 children and sees an excellent doctor in Cleveland by the name of Dr....
254
Arrants@xxx.xxx
Mar 4, 1999 12:12 am
In a message dated 3/3/1999 2:15:30 AM Eastern Standard Time, ... fever) Yes, it's something Dr. Shoffner described to me when I went for my biopsy. Sounds...
255
Jeffrey Downs
jdowns@xxxxxxxx.xxxx
Mar 3, 1999 8:53 pm
Yes, Alycia always has more difficulty thinking, walking, controlling her bladder, eating, pooping and whatever when she is sick. Everything seems to shut...
256
Jeffrey Downs
jdowns@xxxxxxxx.xxxx
Mar 3, 1999 8:58 pm
Thank you Lynnie! ;o) I am trying hard to make valuable contributions to the special needs community as best I can and wherever I can. Lori...
257
ACCESS1
1access@xxxxxxxxx.xxxx
Mar 4, 1999 1:33 am
Hello everyone Trish and I send our love and appreciation for the support everyone has offered. This is a very difficult time and knowing this group exists...
258
Jeffrey Downs
jdowns@...
Mar 4, 1999 2:13 am
Pat, Will you please send my love to Trish. Please tell her that I am thinking about her. Lori...
259
Jeffrey Downs
jdowns@xxxxxxxx.xxxx
Mar 4, 1999 2:21 am
Is there an address where we can send Trish cards and flowers? Lori...
260
CRobi59234@xxx.xxx
Mar 4, 1999 2:27 am
... MERRF and MELAS are diagnosed by specific mtDNA mutations. Complex 1 deficiency is measured in blood by a blood test that determines if one is Complex 1...
261
GOLYNIE@xxx.xxx
Mar 4, 1999 2:07 am
In a message dated 99-03-03 20:31:36 EST, you write: << I will keep up on any info I am told. I would like to say thanks to all of you that have had her in...
262
Linda
joelinda@xxxxxxxx.xxxx
Mar 4, 1999 3:13 am
Thank you Kate and glad Staci is somewhat better. Linda S. ... From: Stacimom@... <Stacimom@...> To: Mito@onelist.com <Mito@onelist.com> Date:...
263
Sue Ellen Picker
bookbinder@xxxxxxxxx....
Mar 4, 1999 3:21 am
Dear Sue: Ken has had the southern blotting test which tested for MERFF, MELAS and NARP, as well as about 11 other known common mito. disorders but it tests...
264
Laurie
lfitzger@xxxxx.xxx.xx...
Mar 3, 1999 10:38 pm
Lori- This is the info I have for Trish. Room 2030 Massachussetts General Hospital 55 Fruit Street Boston, MA 02114 Switchboard phone is 617-726-2000 Her room...
265
Linda
joelinda@xxxxxxxx.xxxx
Mar 4, 1999 4:47 am
Well, appraiser comes at 8am tomorrow and if I don't get enough value on this house I'm screwed. Do you'all sometimes feel like the whole world balances on...
266
SKIPA50@xxx.xxx
Mar 4, 1999 6:55 am
Quest magazine, published by the Muscular Dystrophy Association, has a feature article this month titled below and WEB address. Drs Salvatore DiMauro and ...
267
Kristine Biagiotti
kbiagiotti@xxxxxxxxx....
Mar 4, 1999 1:35 pm
Hi Lori I stopped to see Trish last Friday she is at Mass General Hospital Room 2030 in the Phillips House. Her phone number there is 1-617-724-6074. Kris ...
268
mary potter and clark...
ceid@xxxx.xxxx
Mar 4, 1999 5:41 pm
ANyone have any good papers or pointers discussing dosaging of co enzyme q10? I've read the docs were initially discussing 4.3 mg/kg/day, and have now changed...
269
Jeannine Sawyer
sawyer@xxx.xxxx
Mar 4, 1999 7:50 pm
I would be intersted in hearing from anyone on this list or any one that you know of that is getting IVIG therapy. If you are or know of someone who is, could...
270
Billy Francis
billyfrancis@xxxxxxxx...
Mar 4, 1999 8:23 pm
Jeannine, there's a Mom on Our-kids and another list I belong to - whose son kevin gets IVIG for SCID. Also, I have a friend in Washington state who has been...
271
mary potter and clark...
ceid@xxxx.xxxx
Mar 4, 1999 9:25 pm
Have you found anything that helps with it, other than keeping things quiet? mary...
272
mary potter and clark...
ceid@xxxx.xxxx
Mar 4, 1999 9:29 pm
Has anyone found that potassium helps with tremors? I feel that it does with Amanda, although her serum potassium levels are within normal range. Mary...
273
Jeannine Sawyer
sawyer@xxx.xxxx
Mar 4, 1999 9:54 pm
Mary, Caitlin's serum potassium levels are only occasionally out of whack, yet she seems just to do better when her levels are closer to the high end of...
