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Just diagnosed with BMD age 42
Hi there,
Last August, I suddenly felt quite ill after a relatively gentle bike ride (12 miles on the flat). After foolishly waiting nearly a week I rang 111 who sent an ambulance (which arrived in 5 mins). Finding my blood pressure was ridiculously high they took me into hospital. I was in hospital for nearly 3 weeks, and had at least 6 different kinds of scan. The ultimate conclusion was that I had Cardiomyopathy AKA heart failure, with an unknown cause. While I was in hospital they took blood for genetic testing.
Since I was in hospital I have been walking a lot. I have been increasingly experiencing one of my legs suddenly partly giving out and 3 or 4 times in the last few months I’ve fallen over. Like, I’m walking and suddenly without warning I’m on the floor.
3 weeks ago I went to the GP about my legs, and he suggested the possibility of MD. 2 weeks ago I had a follow up appointment with the cardiologist at the hospital who had the results back from the genetic test, with the “suprising result” that I have BMD.The cardiologist has referred me to neurology and I’m waiting to find out when my appointment will be. So as yet I don’t know any more. It’s a lot to process and I don’t really know what this diagnosis is going to mean for me.
I’ve been suffering with depression and anxiety since a breakdown in 2012 and I felt incredibly down for a few days after finding out. Now I’m sort of in a mode of trying to make the most of my life while I’m still mobile as who knows what the future holds.It’s a shame that the link to this forum is so buried on the MDUK website. I think that’s probably why it’s so inactive. It could be a great resource if more people knew it was here. I thought I had explored all the main sections of the site, and only discovered it because I googled “muscular dystrophy online forum” after having searched for discussion groups on Facebook and finding the only decent size ones were US based.
Reply To: Just diagnosed with BMD age 42Hello and welcome, although sadly under these circumstances. It can come as quite a shock as oyu probably had not heard about it until you were diagnosed. But I would urge you not to feel downhearted. I have met so many MD people in my time, from pretty much all ages, All of them are happy, and busy and making the most of life just as you are doing now. I was diagnosed at a similar age to you and thought that it cannot be good. I will be honest and say I have had some bad times, mostly with the ‘authorities’ not helping as they should. You need to discus matters with a neurologist if you are not already doing so, and of course make sure you get in touch with a physiotherapist who is knowledgeable about MD and can make your mobility easier. You also need to look at how, if at all, it may affect your home life and your career and what adaptations that you may need as time progress. There are lots of things to keep you busy, including looking forward to the future as everyone else does.
Of course we will be here to help you along the way if you need any advice, and MDUK as a whole has a lot of experience and data which you will find useful.
Do please keep us up to date.Mike
So many love songs, so little love.
Reply To: Just diagnosed with BMD age 42Thanks for your reply Mike, it made me feel a little better
Reply To: Just diagnosed with BMD age 42Mike could you drop me an email to robin@stent.org.uk? I wanted to have a chat with you about the forum but the message function doesn’t seem to be working.
Reply To: Just diagnosed with BMD age 42Hi there, Robin, I too have BMD and am 48yo. I was diagnosed at 28 when my then wife forced me to go to my GP. I was struggling to climb the stairs at home and had lost the ability to run.
Alot of things made sense when I was diagnosed; I had been having symptoms since about age 10, but it was put down to ‘growing pains’. Life cold have been alot easier if I had known!
This forum used to be very busy BTW, I just assumed folk were now doing their chatting on social media.
Reply To: Just diagnosed with BMD age 42I agree it used to be very busy but it has gone downhill constantly. I have been fighting for years to get action on in. I also use the diabetic forum and it is way busier than this and I am not confident that it is all down to social media.
Mike
So many love songs, so little love.
Reply To: Just diagnosed with BMD age 42I agree it used to be very busy but it has gone downhill constantly. I have been fighting for years to get action on in. I also use the diabetic forum and it is way busier than this and I am not confident that it is all down to social media.
Mike
So many love songs, so little love.
Reply To: Just diagnosed with BMD age 42I agree it used to be very busy but it has gone downhill constantly. I have been fighting for years to get action on in. I also use the diabetic forum and it is way busier than this and I am not confident that it is all down to social media.
Mike
So many love songs, so little love.
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