Hi myotubular_myopathy, I set up a Facebook profile where I can post my pictures, videos and events and I want to add you as a friend so you can see it. First,...
7296
coleyoley825
May 13, 2010 3:16 pm
my son had ptosis too and he had a muellerectomy. i like that surgery better than others that were offered because there is not any scaring on the outside of...
7297
Christy Davis
gagirldavis
May 13, 2010 3:17 pm
Lost yahoo info back on line Christy Davis...
7298
emeralds4maria@...
emeralds4mar...
May 13, 2010 3:17 pm
Does anyone know Amy Villon from Greenville, SC and how I can contact her. Our children were both born the same year with MTM/CNM. And Sophia was born in...
7299
ecodhanan_2005
May 13, 2010 3:17 pm
DEAR SIR, MY YOUNGER BROTHER(AGE 14)HAS BEEN FACTED BY MYOPATHY, HIS CPK LEVEL IS 8000 IU. HE IS STRUGGLING TO WALK WITHOUT ANY HELP, SPECIFICALLY HIS RIGHT...
7300
michaelpeva
May 13, 2010 3:17 pm
We just got a Liver Function test back for Christopher, it was elevated. We don't know what this means yet except that other children with MTM have had liver...
7301
Christy Davis
gagirldavis
May 13, 2010 3:17 pm
Did Patrick have brain scans done (ie, cat, mri) and if so did it show anything. Josh had either an mri or cat when he was 6 months old during the diagnosing...
7302
kristin.burlage
May 13, 2010 3:18 pm
My son Justin is almost 6 years old, he was diagnosed with mtm1 at 4 weeks old. I have been away from this group for over 2 years. Justin is doing very well....
7303
tones_mom
May 13, 2010 3:18 pm
My son has been just been diagnosed with the autosomal dominant form of myotubular myopathy. I am looking for anyone who either has or know someone with this...
7304
burke stansbury
stansbum
May 13, 2010 3:19 pm
Hi friends, I'm writing from Washington DC Children's Hospital where my son Lucas is staying. He's 5 1/2 months old and was recently diagnosed with Myotubular...
7305
mtmmom2dale
May 13, 2010 3:19 pm
Wow, I joined in December, but haven't seen any posts until now. How often is this site used? Is it just for children with the disorder? Thanks in advance....
7306
webbsurfer613
May 13, 2010 3:19 pm
I'm a female adult who was diagnosed with MTM. Are there other females in this group who also have this disease? I'm looking for other women who have this...
7307
apar87
May 13, 2010 3:22 pm
I am Ajay Agrawal from India my age is 60 years and suffering from ADCNM, i would like to know How far the Stem Cell Therapy (Mesenchymal Stem Cells) is...
7308
Myotubular_Myopathy-o...
May 13, 2010 3:22 pm
ATTENTION MEMBERS Thank you all for being a part of our Myotubular Myopathy support group. Over the years, I have been contacted by members asking for a more ...
7309
Delma M
deema_1979
May 13, 2010 3:22 pm
My daughter is pregnant and the father of the baby has a brother with this disease I was wondering if anyone could tell me where I could find some straight to...
Hi Tones mom. Please look at Toni Abram's website - see http://centronuclear.org.uk/theinformationpoint2010/pages/about/about.html and Toni herself has this...
7312
Wendy
hughesdewy
May 13, 2010 3:38 pm
Hi Dhanakumar S I'm so sorry to hear this. Has he had muscle biopsy diagnosis to say exactly what type of myopathy he has? Generally and from what I know, the...
7313
TONI ABRAM
tonilouisa71
May 13, 2010 5:07 pm
Thank you Darrin. Toni  www.centronuclear.org.uk            |          www.buy.at/theinformationpoint  ...
7314
TONI ABRAM
tonilouisa71
May 13, 2010 5:16 pm
Hello My name is Toni - my father and I are diagnosed with autosomal dominant centronuclear myopathy - you can read our story at...
7315
TONI ABRAM
tonilouisa71
May 13, 2010 5:28 pm
Hello My name is Toni, my father and I have and I have the dominant form of cnm. I am a bit bowled over by all the posts that have suddenly appeared too...
7316
TONI ABRAM
tonilouisa71
May 13, 2010 5:36 pm
Hello I am female also, my name is Toni - my father and I are diagnosed dominant cnm. You can read our story at...
7317
Betsy Grant
scottandbets
May 13, 2010 7:16 pm
my son had liver problems in the early years. He had elevated enzymes, jaundice, itching, and a palpable liver edge. all of it resolved later on, little was...
7318
Betsy Grant
scottandbets
May 13, 2010 7:21 pm
My son had a low sodium "incident"; when he was hospitalized once. He developed a low sodium and no explanation. I don't remember how we resolved it, or if it...
7319
Betsy Grant
scottandbets
May 13, 2010 7:23 pm
I agree with Toni, I hadn't seen much activity at all on this group until suddenly today!...
7320
Corey Leibowitz
cleibo1
May 14, 2010 12:24 pm
My son had liver issues, jaundice, itching and elevated billy rubin. He had it when he was 4 and he had it again when he was 8. We've had numerous testing done...
7321
patrickmbowers
May 16, 2010 5:48 pm
Hi Corey, I don't know if your on Face Book or not but this was brought up on the FB MTM Disscussion group not to long ago regarding liver issues, itching,...
7322
Debbie Maughan
debbiemaughan
May 18, 2010 12:29 am
Hello Bower Family, I have a question regarding the Elacare. Does it provide enough protein for the diet or do you have to add something to it?? I have mention...
7323
patrickmbowers
May 18, 2010 1:05 pm
Hi Debbie, Elacare is actually an amino acid based formula which means the Proteins are already broken down. Protein is still present but it means the liver...
7324
patrickmbowers
May 18, 2010 2:46 pm
Hi Christy, Yes Patrick did have MRI's done at different times in his life. The first MRI was at @ two months old at UCONN NICU in an attempt to diagnose him....
