It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Muscular Dystrophy Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-10-2013, 08:09 AM   #1
Newbie
(female)
 
Join Date: Jan 2013
Location: ontario,canada
Posts: 2
thumbalina HB User
Smile scapulo peroneal muscular dystrophy

Good morning everyone,
i am new to this site and very happy to stumble across it and become a new member,although im not quite sure how to use this site i will give it a try
.Does anyone out there have the rare muscular dystrophy called scapulo peroneal muscular dystrophy?

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-26-2013, 02:34 PM   #2
Inactive
(male)
 
Join Date: Jan 2013
Location: Chelmsford, MA
Posts: 3
Mike5058 HB User
Smile Re: scapulo peroneal muscular dystrophy

Hello,
I happen to have scapulo or scapula peroneal MD. In fact the research that was done tracked our family back to Canada where it was determined where the disease originated many generations ago. So there's a small group of my family members who have the disease. I'd love to discuss this more with you. Feel free to message me back.
Michael

 
Reply With Quote
Sponsors Lightbulb
   
Old 02-03-2013, 04:04 PM   #3
Newbie
(female)
 
Join Date: Jan 2013
Location: ontario,canada
Posts: 2
thumbalina HB User
Smile Re: scapulo peroneal muscular dystrophy

Quote:
Originally Posted by Mike5058 View Post
Hello,
I happen to have scapulo or scapula peroneal MD. In fact the research that was done tracked our family back to Canada where it was determined where the disease originated many generations ago. So there's a small group of my family members who have the disease. I'd love to discuss this more with you. Feel free to message me back.
Michael
HI there,
thanks for the reply back,i was so happy to read this..i am brand new at this site and i got the reply in my e mail and tried to go on the site and couldnt and then lost my password and its taken me till now to request a new password..Anyhow not sure if this will work or get to you but i will give it a go.i have scapulao peroneal muscular dystrophy since i was about 10 years old. i was diagnosed with it at hamilton mc master hospital .Can you tell me more of your story please,i would love to hear more from you about it and its so nice to find someone else out there with it because it is so rare and hard to find info too.Awaiting your reply,thank you ))))) p.s/ bear with me while i figure this site out to.if you dont hear back from me,it may be that im struggling to find my way back to this message,but i will give it my best shot and hope for the best.....

 
Reply With Quote
Old 02-12-2013, 12:38 PM   #4
Inactive
(male)
 
Join Date: Jan 2013
Location: Chelmsford, MA
Posts: 3
Mike5058 HB User
Re: scapulo peroneal muscular dystrophy

Hi,
I think I'm having same issue.

Last edited by moderator2; 02-12-2013 at 01:09 PM. Reason: please do not post your email

 
Reply With Quote
Old 02-23-2013, 01:18 PM   #5
Inactive
(male)
 
Join Date: Jan 2013
Location: Chelmsford, MA
Posts: 3
Mike5058 HB User
Re: scapulo peroneal muscular dystrophy

Okay, no email addresses. Good to know.

Anyway, I guess I've had scapulao peroneal my whole life. At age 7 months I had a tracheostompy because of my paralized vocal chords made breathing very difficult. Other than that I grew up a pretty happy, healthy kid. I tried keeping up with the other kids and was never without a quick wisecrack or dirty joke. I still played baseball and was in the Boy Scouts, played the drums and dreampt of having my own rock band. I got into a lot of mischieve with my 5 brothers and sisters and the hoards of school friends.
Looking back, the 'family'disease " was never talked about because no one knew anything about it I had several cousins who were disabled and a younger brother with a lesser form. That's just how it was.
The disease started to slowly progress in my late teens when I started having difficulty climbing stairs. I went to college, worked for a Boston consulting company, traveled, partied with friends and didn't let the disease slow me down.
Eventually and sadly enough walking became difficult. I started with a cane, then a walker to a wheelchair. Because of many bouts with pneumonia breathing became difficult so I was put on a ventilator. That was in 1997.
Fast forward to 2013. I'm am completely dependent of others to care for me. We now know a lot more about the disease and there's always hope they'll be a cure. I still feel like the same wisecracking kid with the dirty jokes. That's the one thing this horrible disease hasn't taken from me.

I promise to get this site frequently and to to hear from you soon.
-Michael

 
Reply With Quote
Old 07-04-2014, 09:08 AM   #6
Newbie
(male)
 
Join Date: Jul 2014
Location: santa cruz CA USA
Posts: 1
Mr Diag Nosed HB User
Re: scapulo peroneal muscular dystrophy

Hello, I was recently diagnosed with scapulo paroneal md and I feel I may have been misdiagnosed for the following reasons. I have not experienced any symptoms of what anyone here describes in fact my symptoms did not begin until about 2 years ago and I'm 55. Although I have always had weak shoulders and suffered and injury to my shoulder which never healed right. My legs have always been extremely strong.

My main problems physically at this point started after a violent wisdom tooth extraction in which I had to tell the dentistt to stop because he was yanking on my neck too hard. the next day i could not move my head correctly. it kept falling forward and i didn't have the strength to hold my head up normally.

It did not get better and after a few months like that it started affecting everything especially my gait. I cannot walk normally anymore as I feel off balance so i lock my knees when I walk and so my quadriceps have begun to atrophy badly from underu-se. My shoulder injury of about 15 years earlier has left me with limited range of motion in my arms.

I finally got health insurance and my PC doctor, after a brief examination, diagnosed me with Lou Gerrig's Disease. He referred me to a neurologist and this doctor said that was a ridiculous diagnosis and he came up with scapulo paroneal md. He says its hereditary but no one in my family has it. Does this sound right to anyone. I would appreciate any opinions because i'm at a loss to know what to do. mostly I have pain in my neck.

thanks MDN

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 04:53 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!