November 4, 2014 at 9:04 am #95000Re: limb girdle 1b
Hello and Welcome to the TalkMD forum!
I’m not sure if we have members with that specific variant but there are quite a few with an undiagnosed LGMD type. You can read past threads by typing ‘LGMD’ into the search box in the top right corner of the page.
There are quite a few issues that crossover with other sub-types of MD so it may be there are other topics you might find interesting and relevant to you.
It’d be great hear more about you if you wish to share your story or if you just want to vent or chat – it’s a pretty good place to do so
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015January 26, 2015 at 1:24 pm #95002Re: limb girdle 1b
Welcome to the forum LMBA76
Look forward to reading more posts, feel free to have a good browse, searching for certain words or phrases can be very useful and please ask away if we can be of any help.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015October 1, 2016 at 9:19 am #138811Reply To: limb girdle 1b
I have just been diagnosed with limb girdle 1b last month. Explains the health issues I’ve been having. I’m still trying to process the diagnosis and what it means for me long term. I’d be interested to hear about your story and how it’s affecting you!Jagger SomersParticipantPosts: 0Joined: 01/10/2016October 1, 2016 at 11:12 am #138813Reply To: limb girdle 1b
Hi, I have a type of Limb Girdle MD and am still undergoing diagnosis. I have been told that I have a rare type, which is why my diagnosis is taking so long. I’d love to hear your story or anyone else’s about how LGMD affects you.
Shevvyshevvyt1ParticipantPosts: 0Joined: 16/11/2013October 16, 2016 at 9:44 pm #142002Reply To: limb girdle 1b
Hi Jagger and everyone else,
I have an unspecified type of LGMD. It has been progressive over the years. I now use two walking sticks and a mobility scooter. I also use a stairlift now. I have a hoist in my car for the scooter, which means I can go out. Although going out is stressful and difficult due to access, seating and suitable facilities. I am a Teacher of the Deaf but my role is purely assessment now due to my reduced mobility. I work three days, which is plenty! I suppose that it is in the past three or four years that my condition has really impacted upon me.
Hope to hear from you soon.
Shevvyshevvyt1ParticipantPosts: 0Joined: 16/11/2013
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