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Symptoms
Just a couple of points that I wondered if anyone had any thoughts about…..
1.I’m 46 and I’ve just been diagnosed with Becker MD and am awaiting a referal to see a cardiologist and a neurologist. I’m a bit concerned about my heart (which I understand is typically affected / weakened by BMD). My symptoms are a feeling of being very aware of my heartbeat (particularly in bed) and slightly trembly type feelings. Another symptom is that I seem very easily surprised by noises, particularly at night. My heart occasionally aches, but its more a feeling of the presence of my heart. I also seem to get pins and needles at night in my arms. It’s all rather worrying of course, and this could be affecting how I feel, but these heart feelings are very distinctive.
I think I’ll probably go to the doctor sooner rather than await my referral but I wondered if any other sufferers had had similar symptoms.
I generally need to lose weight and start being a lot healthier in order to maximise how long I remain mobile.
2. My daughter is a carrier and I’m concerned also about her, as she is exhibiting cramps etc. But specifically she has always suffered from a hoarse voice, we’ve had this checked out but they couldn’t find anything wrong with her with regards to inflammation etc. She’s visiting a speech therapist, but I’m now wondering if this hoarsness could also be symptomatic of BMD.
Has anyone got any ideas about this? I feel awful at the thought that my daughter may be suffering – one almost feels “I did this to her” at times.
If anyone can share any insights about any of this I’d appreciate it, thanks.
Re: SymptomsHi Stevie
I see from your other thread that you have already been directed to some sites about BMD, and it is only natural you will have 101 questions, queries and concerns buzzing about you.
Many moons ago when my then neurologist asked if I had ever had an ecg or ultra sound on my heart it had not occured to me that this was an area of risk . Of course the moment any medical professional mentions the heart I was in mild panic and became accutely aware of its every beat and viabration, but the medics seemed unconcerned by the results. There are times when I lay flat I can visibly see my skin lightly tremble with each beat and I am often aware of its sound. For me, it was a case of when something was brought to my alert attention I noticed every minor detail when really everything was fine. It’s like the spider on the wall, you try and ignore it but you cannot stop your eyes from starng at it.
As for the pins and needles thing, I do get that quite freuently, from sitting in a certain chair or position for any period of time. From laying in bed, if I lay on my back my shoulders feel heavy and my arms and fingers will tingle. If I lay on my side, which ever side is upper most the hip will ache and my leg tingle, also my fingers will tingle. Effective sleep in achieved only by laying on my front. I only sleep in any other position because I am suitably exhausted. If I awake too quickly [usually coz some numpty is calling me at a stupid hour of the morn] my arms and hands are trembling, as if I were shivvering and it is a concerted mental effort to control. More than anything I feel cold, I am one of the few people who live in woollen jumpers even in the heatwave, I am rarely ever comfortably warm.
Once upon a time I had a neuro-nurse who would call me every few weeks between consult visits to check-in as it were. if your GP knows of one maybe this person could answer some of your more immediate queries and put your mind at rest while you wait for the referral, and you never know they ‘might’ be able to give you a better idea of when that consult appointment would be. No harm in asking, is there.
As for your daughter – I am not an expert with BMD so cannot comment about the hoarse throat issue. I would say though, that as hard as it may be, don’t blame yourself for what may or may not be, this is not something done by intention it is a ‘happenstance’. As a loving father you want the best for your children, you only worry because you care and it is that care that will cushion you both as you learn your body’s ways.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: SymptomsAMGmod,
Thanks for your advice, it is appreciated. I think I’ve been panicking a little as I come to terms with my condition. Reading about your own symptoms certainly puts mine into perspective. I managed to have a conversation with my GP who described what happened to a weakening heart, it was quite shocking, however he didn’t seem overly concerned about my symptoms. This also gave some reassurance. I’ve now got a date to see a cardiologist in October. So will take it from there.Re: SymptomsStevieG
It is understandable when given so much info to process quickly. Good news on your referal appointment, October is on the doorstep, hopefully you will get more information and feel more reassured after the appointment.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
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