I have mtm and did not find out that I had md at all til 11 years ago. Then it took 8 more years til they were able to pinpoint that it was mtm. My son has it...
Would like to talk with others who have mtm. I was diagnosed 3 years ago. Looking forward to hearing from you. pat redscootee@... http://mdasw.tripod.com...
I just wondered if this list is still active? Are there others out there with mtm who would like to share? Lets hear from you. :) I was told I had mtm 3 years...
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mlhayes99@...
Oct 29, 2001 4:31 pm
MY 6 YEAR OLD NEPHEW HAS ONE OF THE RAREST FORMS KNOWN AS "X-LINKED MYOTUBULAR MYOPATHY"...
That is the kind that my son and I have. I am 50 and my son 26. I am using a scooter but my son is still able to walk just has trouble with stairs. Looking...
Please see attached in MS Word Format. Might be useful. At US$ 550 it could be your inexpensive First or Standby Wheelchair. You could probably have one at ...
... My son is 4 and has the x-linked form of Myotubular Myopathy. He is also part of a study group being conducted by Gail Herman a geneticist from Ohio State...
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mlhayes99@...
Nov 12, 2001 3:49 pm
I THINK I'VE HEARD OF YOUR FAMILY NAME BEFORE. GAIL HERMAN WORKS WITH MY NEPHEW, BRODERICK COLLINSON, AS WELL. HAVE YOU HEARD OF HIM? I HOPE TO HEAR BACK...
I know it's been awhile since anyone e-mailed, but I wanted to let you know that my beautiful son Robert Joseph, died two weeks ago on February 23rd. He just...
I recently found this group and would like to have contact with other adults with this disease. I am 40 years old and was diagnosed with this last year. My...
To anyone interested..... I was the parent of a child with Myotubular Myopathy. My son Bill, was born in 1977 and lived until 1997. If I can be of any...
hi Kathy,My name is Patricia and I have a son who is 7 and has Myopathy. He can walk but cant jump,run and has trouble getting up and down,he gets tired...
Hi Patricia and Kathy, We have a son who has x-linked myotubular myopathy. His name is Jay Jay and he is 5. He is very happy and smart but very weak. He is...
hi Bob and Sherry Thomas stayed sick alot in school and his doctor put him on homebound so his teacher comes here to the house to teach him,and we get the flu...
Hi Patricia, It was good to hear from you. Our son may have to be homebound soon too. I hope to keep him in school to have the interaction with the other ...
Hi Patricia, It was good to hear from you. Our son may have to be homebound soon too. I hope to keep him in school to have the interaction with the other ...
hi Bob we have done genitic testing...found nothing Thomas is adopted so we have no family history*sighs* As far as homebound,I know what you mean,I hate that...
HI again, We are in New Jersey but the "Scoggins"; are in Texas also. John is 12 I think and has the x-linked Myotubular myopathy. Gary, Pam run the MTM org...
Hi, Patricia! My name is Connie. I also have a son born with x-linked myotubular myopathy (I have one son, Elijah, who passed away in 2001 who had it, and I...
hi Connie.....nice to meet you..... We go to Texas Childrens all the time,have a appointment on the 4th with a dr Gyr and then a sleep study on the 11th.I have...
Hi, Patricia. Nice to meet you as well. Do you know if Thomas was born with the symptoms of his disease or not? My sons were both born with it- i.e. it...
HI. I am a single mother of two young children. My son is 12 my daughter is 2. I had a son born in 1988 with MTM he died a month after his birth. About ten...
In a message dated 2/16/2003 10:53:24 AM Eastern Standard Time, ... I am so sorry about your son. You are the first adult I've seen in this email group with...
Wow it's nice to know that I am not alone in this. my doctor knows nothing about MTM other than what she reads in the medical books. I am not sure you are ...
In a message dated 2/18/2003 3:09:36 PM Eastern Standard Time, ... Renee, I am sorry you have to go through this. From my standpoint, it's not a lot of fun as...
Iv noticed that there are a few more female sufferers of myotubular myopathy that have now joined the group, im curious as to which form of myotubular they are...
I have a son with mtm. He is 13 months old. His name is Nicholas Robert. He has a tracheostomy and a feeding tube. He had club feet when he was born . He was...
In a message dated 2/27/2003 3:24:27 PM Eastern Standard Time, ... I do not know which form I am suffering from. My doctor has said it really doesn't make any...
I have a son who was born 8 weeks prem who has been formally diagnosed with XMTM, they have found the mutation and our genetisist says there is only one other...
