Hello all! So good to have the list back. I an 51 years with myotonic dystrophy. My doctor has just told me that my liver enzymes are way out of whack - some...
62
Martin Coates
MartinCoates@...
Sep 10, 2000 8:21 am
Hi all Martin Here from the UK, its nice to be back although my last messages were quaranteened and sent back, is this becouse i'm in the UK ?. anyway I hope...
61
Pat Tudisco
tudisco@...
Sep 10, 2000 1:47 am
Adrian We started Tyler on Deflazocourt when he was 5 years old. It did wonders for him in the early years, he rode a two wheeler and everything. Today he is...
60
Adrian F Ward
adrian.ward@...
Sep 10, 2000 12:23 am
Pat, I agree, while their is still benefit and few side effects, I think we will keep Zak on the tablets. The only problem he has is the weight gain. He is 9...
59
Pat Tudisco
tudisco@...
Sep 9, 2000 9:32 pm
Adrian According to the doctors I have spoken to both in the U.S. and Canada, they all seem to agree. After the boys loose their ability to walk, the steroids...
58
Mark Schager
markwolfman@...
Sep 9, 2000 7:14 pm
I've used steroidal treatments to stop allergic reactions. My doc said steroids suppress an overactive immune system and inflamed tissue. My worry about...
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Adrian F Ward
adrian.ward@...
Sep 9, 2000 6:58 pm
Pat, My son Zak (9 years with DMD) has been on Deflazcort for about 8 months now. For the first 3 months he seemed to get better. He was walking on his own...
56
Dee
mnd@...
Sep 9, 2000 4:23 pm
hello.....it is great to be back in touch with this group! Dee in OHIO...
55
Stephen Curtin
drcurtin@...
Sep 8, 2000 9:49 pm
Deflazacort is a cortical steroid similar to predisone. Like Predisone side-effects vary from individual to individual. Usage of this drug should been followed...
54
Pat Tudisco
tudisco@...
Sep 8, 2000 8:21 pm
Dear Fasahat Deflazocourt is a steroid used to slow the progression od Duchenne MD. It is very much like Predisone but normally has fewer side effects. My son...
53
Donoso C., Luis (Casa...
LDonoso@...
Sep 8, 2000 4:29 pm
Hello Brenda Luis Alberto Jr. has an not-defined class of CMD..in our last medical trip was imposible to clasiffied... He was born with fractures (one thery...
52
Suxess
mssuxess@...
Sep 8, 2000 3:40 pm
whats this about ? did i miss some mail ? ... From: Martin Coates <MartinCoates@...> To: md-list@egroups.com <md-list@egroups.com> ...
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Fasahat Khan
fasahatk@...
Sep 8, 2000 3:38 pm
What is deflazacort and for which type of dystrophy or atrophy is it used? Is it curative or simp;y slows the progression? Thanks. Fasahat Khan Great minds...
50
Suxess
mssuxess@...
Sep 8, 2000 3:36 pm
Yes Mark, the ads are really irksome.... But then you cant have your cake and eat it too !!! its nice to have the list back....... and you are as always -...
49
Savage, Brenda (Abacus)
savage@...
Sep 8, 2000 3:21 pm
Luis, Does your son have Congenital "Muscular"; Dystrophy or Congenital "Myotonic"; Dystrophy ? Brenda Savage Mom to Jessica and Chelsea (both with Congenital...
48
Terry Buzbee
tabuzbee@...
Sep 8, 2000 2:34 pm
Dan I sorry I have delayed in responding to your e-mail. I'm glad everything worked out in your search for calcort. I hope William shows improvement with no...
47
Mary Ann Littlefield
mlittlef@...
Sep 8, 2000 2:14 pm
Andrea, I have not met Dr. Stefans, but my stepson and daughter-in-law are thankful that she is one of William's doctors. She has been very responsive to my ...
46
Vikki A. Stefans
vstefans@...
Sep 8, 2000 1:38 pm
I'm glad to be back too! I went to Parent Project and heard Dr. Biggar, and we are going to be more aggressive about gettign our kids on steroids. I have at...
45
Jenny Smyth
smiles@...
Sep 8, 2000 3:39 am
Hi all, Are muscle biopsies to help diagnosis a muscular dystrophy ONLY or can it diagnosis other neuromuscular conditions including ataxia and rare ...
44
mccafferyrv
mccaffer@...
Sep 8, 2000 2:32 am
Mary, Dr. Biggar of Canada presented at the PP conference in Pittsburgh empirical data taking from his patience using prednisone or deflazacort. Deflazacort ...
43
Baskstl@...
Sep 8, 2000 2:29 am
Hello Everyone, It has been a long time since we have been on the list. At least over a year. I will re-introduce us. Our daughter Melissa is 14 and has...
42
Diana
chowe@...
Sep 8, 2000 12:04 am
Hi everyone!! Really glad to be back!!! Hey Mark I was talking to one of the agencies that we use for wheelchair repair and we were talking about info on...
41
JoyceGlass@...
Sep 7, 2000 10:53 pm
I read a news article from Ivanhoe Broadcast News, September 2000, (webdoctor@...) that said a research study at the UCLA Duchenne Muscular Dystrophy...
40
Sharon Hesterlee
shesterlee@...
Sep 7, 2000 10:18 pm
Hi everyone, I think I can take a stab at some recent questions: ... and they are unable to determine what type of MD the child has. Has anyone ever hear of...
39
Adele Abramowitz
jasona@...
Sep 7, 2000 8:57 pm
Albuterol study is for, I think FSHD, Facioscapulohumeral Muscular Dystrophy. There was a small article in the latest issue of the Quest magazine(Vol 7, No.4...
38
Martin Coates
MartinCoates@...
Sep 7, 2000 8:18 pm
what is there to quaranteen ??? did you ever read the old list ? its for people whose loved ones have got a genetic disorder that cannot be cured and basicaly...
37
Mark Schager
markwolfman@...
Sep 7, 2000 8:14 pm
I've been taking it for my nose for my allergies, for three years and haven't noticed much aside from the fact I'm 32 with DMD, on a vent with cardiomyopathy....
36
Fasahat Khan
fasahatk@...
Sep 7, 2000 2:40 pm
Yes, I do have a similar experience. I am diagnised for SMA but my neither my musle biopsy report nor the DNA report could confirm it. Based on other tests...
35
Mary Ann Littlefield
mlittlef@...
Sep 7, 2000 2:35 pm
Hello Everyone, I recently corresponded via e-mail with Dr. Michael Brooke, Professor of Neurology, U. of Alberta in Edmonton, about prescribing Deflazacort...
34
Jose Garcia
joseg@...
Sep 7, 2000 1:58 pm
We had a boy ( 31.08.99 - 02.06.2000) with Congenital Myotonic Dystrophy and the muscle biopsy did not show anything, what determined the type of disease was a...
