November 7, 2018 at 6:31 pm #163614LGMD Possible Diagnosis
I am currently in the process of being diagnosed with possible LGMD. I’m still undergoing tests, muscle biopsies, heart scans etc.
I was wondering if anyone else has been through this process and can offer support. At the moment, I’m currently struggling with what’s happening.
So any advice or past experience from anyone would be greatly appreciated.
BradleyBradB1993ParticipantPosts: 0Joined: 15/10/2018November 8, 2018 at 12:39 pm #163650Reply To: LGMD Possible Diagnosis
Hello and welcome to the forum Bradley. I am sure that we have a number of fellow LGMD people on the forum amd I am sure they will be in contact soon. In the meantime there is a contact group on Facebook you might look into.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015November 25, 2018 at 4:41 pm #164249Reply To: LGMD Possible Diagnosis
I have LGMD and im a young 45 lol, I remember when i was diagnosed 25 years ago, it really was a bolt out of the blue, I noticed I couldnt run as fast as I use to so went to Dr.
If you want to have a chat send me PM or reply on forum.
Regards JohnNovember 26, 2018 at 10:06 am #164268Reply To: LGMD Possible Diagnosis
hi to John and Bradley
The Forums Private Message facility is not working at the minute.
Hope you are both well and look forward to your posts.
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010November 26, 2018 at 10:05 pm #164306Reply To: LGMD Possible Diagnosis
I am a member of a forum on wheelchairdriver.com My name on there is iceuk, if you register to join website you can send me a pm. I dont really want to write email or mobile number on open forum as im sure some bot will harvest for spamming.
Regards johnSeptember 30, 2019 at 12:19 am #181479Reply To: LGMD Possible Diagnosis
I was diagnosed about 15-17 years ago of sorts. Been through just about everything so far. More than happy to talk or chat about it. I know it’s a year since you posted but here if you need an ear to bend!
All the best
"Stairs? Yes we have stairs, but there's only three" :-/MarkParticipantPosts: 0Joined: 21/02/2017September 30, 2019 at 9:31 pm #181525Reply To: LGMD Possible Diagnosis
Hello. I was diagnosed last year with lgmd2L. I was getting sore shoulders and hips but never had any signs of weakness. My cks where always very high, between 3 and 4000. Gps always said some people just have high cks and I never thought anything of it until I met with a rheumatologist because my shoulders were getting very sore who discussed it with a neurologist. I met her and all it took was to see my ck levels and my large calves! She just did the genetic test straight away and was right with her suspicion. By reading this forum I think I got quite lucky with such a quick diagnosis. It did come as quite a shock to me but it does get easier over time
Just a question if anyone knows the answer to and that is will my calves shrink at all?Ems15ParticipantPosts: 0Joined: 31/07/2018
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