October 23, 2017 at 12:01 pm #152285Am I in decline with my BMD?
Hi Everyone, I’m a 34 year old male and was diagnosed with BMD when I was around 3/4 years old, according to my parents it took them a little while to figure out if it was a new ‘strain’ of MD or actually BMD. They settled on BMD. Until recently I used to see my consultant on a yearly basis but haven’t seen him for a little while as I missed the last appointment and they don’t reschedule and I’ve been busy! I live on the Isle of Man and I’ve been referred to Neurology 4 months ago – apparently i should get an appointment in January.
My BMD doesn’t usually affect me too much, I’ve been told it’s mild in my case but over the last 6-9 months I’ve noticed that I struggle to walk over uneven ground and for the last 2 months or so my hips have been really sore when only walking a around 50-70 meters, I’ve also noticed I don’t walk flat on my feet and I try to compensate for this but then my lower back starts to ache also. I have no-one I can talk to about this professionally and I’m really worried things are starting to decline for me, living on the Isle of Man means there is literally no-one who knows what BMD is, I’ve asked my GP on a number of occasions but she hasn’t a clue and refers me to Neurology but there is a huge waiting list here on the island to see someone..
I was referred to Physiotherapy in the mean time and managed to see someone late last week. I was ‘prescribed’ crutches as an aid for walking – she commented that I don’t use a muscle in my back at all ( can’t remember what it was called, lower-mid back ) and my right side is weaker than my left side. Also my right foot turns up slightly and I don’t walk properly.. (go figure!). Walking up and down stairs has become a real struggle for me to the point that going up the stairs I have to take one step at a time and start with my left foot first, coming down the stairs I have to sit on my bum and slide/bounce down as the fear of falling is too great.
I currently have mattress with no bed (saving up for a low/med height bed!) and currently getting up from the floor is near impossible I roll onto my knees then push myself with my arms and ‘climb’ up my legs, this is apparently because I no longer use this muscle in my back.
Driving to and from work has become painful and my feet/legs ache by the time I get to / home from work and it’s only around 15 miles. On the advice of the Physiotherapist I have applied for DLA (not holding out much hope for this..) and a Blue Badge so that I can get a car which i adapted to not have any pedals and I’m able to park a little closer to buildings in a disabled space.
Not having a doctor to talk to is really difficult, am I on a decline? Is this it now? My physiotherapist has said that there is no way back from the crutches due to the apparent muscle wastage and the weaker right side and the fact I don’t use this muscle in my back.
Any advice/help would be greatly appreciated.
MichaelmichaeleatonParticipantPosts: 2Joined: 28/08/2014October 23, 2017 at 9:47 pm #152300Reply To: Am I in decline with my BMD?
Hi Michael. Welcome to TalkMD.
It sounds like you are going through a lot at the moment. It must be frustrating that you cannot access the expertise you need. I don’t know how easy it is but would there be any way you could get a referral to some where in mainland England? There is a centre in Cheshire I believe that would be able to answer a lot of your questions and give you practical advice.
I have found that Neurologists don’t always know much about MD sometimes unless it’s their specialty.
The place in Cheshire is the The Neuromuscular Centre
Good luck with it all. Please let us know how things go and if you have any questions we can help with. Our Advocacy folk may be able to help with DLA/PIP applications and many of us have experience of filling in the wretched forms.
You may find some useful resources on the main MDUK site. Give us a shout if you are after anything specific.
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 25, 2017 at 11:49 am #152335Reply To: Am I in decline with my BMD?
Hello and welcome Michael from another Michael. I have been going to the Neuromuscular Centre in Cheshire for many years now and I must say that their treatment and approach to my condition has changed my life. I am now in a far better place than I ever could have been without them. Hop on to the Mannanan and a drive of aroudn an hour through the Cheshire countryside and you are there. They already have some aptients coming from the Island so you will not be the first. I also guess you may have been referred off island to see a neurologist but so worthwhile pushing for, as is a Blue Badge which will help trememndously. You can get adapted cars without a Blue Badge if you want to pay for one yourself rather than leaving it to the vagaries of the DLA/PIP system. I have just bought a WAV to accomodate a large scooter for me for example.
However, I really must ask. Did your parents not tell you not to come down stairs bumping on your bum? I bet they did and now look how its helps. You havent satarted sliding down on the bannoster again have you?? LOL.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015October 26, 2017 at 3:00 am #152368Reply To: Am I in decline with my BMD?
Hiya Michael. I too have BMD, discovered in 2003, at the age of 28!
I’ve never heard anything about muscles in my back, but I can certainly identify with the climbing up my legs to stand up carry on.
I don’t use crutches, as I found them no use at stopping me when I started to fall. I do a sort of comedy sit down thing on the pavement every so often! Highly amusing for passers by i’m sure.
Unfortunately i haven’t worked since the end of 2009, when my HGV and PCV licences were revoked. I have failed to find work ever since, in fact I gave up a few years ago and got a dog instead!
There is no way I would try to climb stairs these days, not unless it’s unavoidable, and then it’s one step at a time clinging on with both hands.
I appreciate how frustrated you feel about things, it is different when you are only mildly disabled or wasting very slowly; people tend to assume you are fine and don’t give you the space you need to move out of their way etc.
My arms have started to become pretty week this last two years, there is also muscle pain and cramp, but nothing too heavy. I had to ask my 12 yo daughter to open a jar when she was staying over the other week.Very embarrassing!
Whilst I’m in mid moan, I could also tell you that my knees give me quite a bit of pain, I intend to mention it at my annual Neurology appointment next Monday. I usually say everything is fine, “nothing has changed”. (Sounding like a certain robotic PM there!)
Do you get cramp in your groin area? I started getting that from about age 10. All those cross country runs at school and in the Army Reserve. If only I had known then! In fact, it was only when I was physically unable to run at all that I went to the doctor, but that was in 2003 so 18 years after aged 10!
If you want to get in touch, I would be delighted to hear from you. It’s only lately that I can openly admit how lonely I am, it would be great to share experiences with a fellow Becker!
All the best
RanaldranaldParticipantPosts: 747Joined: 05/09/2010October 26, 2017 at 12:17 pm #152406Reply To: Am I in decline with my BMD?
Ranald, that sounds like you do not trust the PM and her statements. I wonder how that could be!!!!
Seriously, pain is a very important part of my life and I guess yours too. I do hope you have sought advice from the pain clinic and tried many combinations of medications to help relieve it.Thankfully, my GP, whilst not knwoledgeable about MD is happy to try anything for me. I have pain everywhere except the riight side of my face, I have just started using Sativex after a successful trial of inhaled Cannabinoids. Please do not suffer.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015
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