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November 7, 2018 at 6:31 pm #163614LGMD Possible Diagnosis
Hi All,
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.
Many Thanks
BradleyNovember 8, 2018 at 12:39 pm #163650Reply To: LGMD Possible DiagnosisHello 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.
Mike
So many love songs, so little love.
November 25, 2018 at 4:41 pm #164249Reply To: LGMD Possible DiagnosisHi Bradley,
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 John
November 26, 2018 at 10:05 pm #164306Reply To: LGMD Possible DiagnosisHi Bradley,
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 john
September 30, 2019 at 12:19 am #181479Reply To: LGMD Possible DiagnosisHI Bradley
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
Mark
"Stairs? Yes we have stairs, but there's only three" :-/
September 30, 2019 at 9:31 pm #181525Reply To: LGMD Possible DiagnosisHello. 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?
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