Viewing 20 posts - 1 through 20 (of 26 total)
  • #73442
    Possible MD

    Hello

    I am posting here regarding a possible MD diagnosis. I’ll keep this as short as possible. Before Christmas I was diagnosed with a heart condition Dilated Cardiomyopathy at the age of 21. Having done a lot of research I found a link between dilated cardiomyopathy and Duchenne Beckers MD. Having looked at the symptoms I feel there is reason to suspect MD. I have almost every symptom.

    From a very young age I always had trouble keeping up with my peers. I was always unfit and out of condition despite being in good shape. As I got older my calf muscles grew spectacularly large, many people got good laugh out of that. Also many gym sessions etc left me in excruciating pain, especially in calf and thigh muscles.
    As I got older at around 18 years of age, I literally could not run (not that I could ever run that well) without falling and making a fool of myself while doing so. I felt as though my stamina and agility was diminishing, eventually I was beginning to do this more and more while walking and climbing stairs. I’m finding stairs progressively worse and a few steps without a handrail seems like torture in my head. I have also noticed lately that when I fall I am finding it more and more difficult to get up using a type of gower in doing so, where I have to climb up my legs so to speak. People are also beginning to pick up on the fact that I walking like I have a limp. I get the feeling that all these symptoms are getting progressively worse and these symptom combined with the dilated cardiomyopathy make it look like a case of muscular dystrophy. I have an appointment with a cardiologist in a weeks time again so I will probably mention it then. It will probably result in an appointment for the neurologist. If they don’t I would be surprised. I think there are too many coincidences for them not to investigate.

    I am posting this however to see has anyone here any experience of these problems or people who have any advice to give at all.

    Thank You

    DCMGerry
    Participant
    Posts: 13
    Joined: 16/01/2011
    #78657
    Re: Possible MD

    Hi Gerry.
    I can identify very well with the symptoms you describe as i was diagnosed with Becker MD aged 28.

    I didn’t go to see anyone for quite a long while but eventually my then wife persuaded me to go and speak to my GP, he took bloods and i was summoned to see a Neurologist who informed me i had Becker MD.

    Please don’t jump to conclusions but you seem to describe pseudohypertrophy of the calf muscles, something i too have developed and i would urge you to go to see your GP asap for clarification.

    I was told the Creatine Kinase level in the blood was the indicator of the fact i had BMD, that is it was present in such a high quantity left no doubt.

    Best of luck mate
    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #78658
    Re: Possible MD

    Hi Gerry, welcome to the forum :)

    Growng I had similar symptoms to you. I have Limb Girdle MD.

    I would fall over for no reasons, had to climb stairs on all fours, coming down I would bum shuffle down them. My calf muscles were big to from walking on tiptoes as I couldn’t put my foot flat. I got diagnosed at 8.

    It is worth mentioning to your doc and getting it checked out

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #78659
    Re: Possible MD

    Hi Gerry, welcome to TalkMD

    I can relate to your symptoms very well also. I was diagnosed with LGMD in my late teens.
    Im sure your appointment will clear things up, but if it doesnt get bought up in conversation its worth mentioning.

    Regards,
    Sag

    Sagar
    Participant
    Posts: 82
    Joined: 20/12/2010
    #78656
    Re: Possible MD

    Hello All

    Thank you for the responses. I think I will press to have the CK blood test done as soon as possible as it seems relatively straight forward to carry out. Other than that it is just a case of waiting it out to see what happens. I have no doubt I will probably have to do a lot of this pressing myself as when I was diagnosed with the heart condition, I could get the feeling it was very rare for them to be treating someone of my age. I suspect any potential trip to neurology will be similar. Boards like this become a wealth of information in circumstances like this. I will no doubt update as things progress.

    Regards
    Gerry

    DCMGerry
    Participant
    Posts: 13
    Joined: 16/01/2011
    #78660
    Re: Possible MD

    Update:

    I have since been to the cardiologists appointment. I told him about my thought regarding MD. I listed off some of the symptoms. I showed him my calf muscles and bingo it clicked with him “looks like you have diagnosed yourelf” In fairness it was kinda funny!! He also looked at a few other things. He commented that I walk with a waddling gait. It almost shocked me as I’m really surprised at how few people have really commented on my walk, especially my family. He took a look at me and said that I visible wasting in my thigh area, especially quads. He did a few strength tests that proved my weakness. It seems pretty convincing that I have MD. He ordered me to do a blood test to test for creatine kinase, which I did this morning. I will have the results shortly hopefully. He also is referring me to a neurologist as soon as possible (apparently there is a long waiting list for seeing neurologists here in Ireland). I hope I don’t have to wait long. I feel like I’ve opened a can of worms. In reality the MD has been staring me in the face for years. Its only when I realised it was effecting my heart that I realised how serious this whole thing is. I’d be glad of any opninions or suggestions.

    Regards
    Gerry

    DCMGerry
    Participant
    Posts: 13
    Joined: 16/01/2011
    #78661
    Re: Possible MD

    Hi Gerry.
    If Ireland is anything like Scotland there will be more or less nothing out there for you!

    We don’t seem to have any muscle centres in Scotland and there are only 2 part-time MD nurses for the whole country. I see a neurologist annually, in fact will be seeing him on 7th Feb.

    I found it very frustrating in 2003 when i was diagnosed and realised there was nothing anyone could do to help.

    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #78662
    Re: Possible MD

    @ranald wrote:

    Hi Gerry.
    If Ireland is anything like Scotland there will be more or less nothing out there for you!

    We don’t seem to have any muscle centres in Scotland and there are only 2 part-time MD nurses for the whole country. I see a neurologist annually, in fact will be seeing him on 7th Feb.

    I found it very frustrating in 2003 when i was diagnosed and realised there was nothing anyone could do to help.

    Ranald

    Hi Ranald

    Thats was a quick reply. Thank you.

    Well if the health system here in general is anything to go by I would’nt be holding out much hope. For about ten years up until 2007, the country was booming and the health system was still a complete shambles. Now we have had one of the biggest economic crashes seen in the modern world, so I guess its still is a shambles. Neurology is certainly one of the worst areas of the health system here. They need at least 40 neurologists but only have about 20 with only 2 with expertise in muscular systrophy, both in Dublin. I’ve heard stories of people with MS having to wait 2 years to see a neurologist at one stage, ridiculous really. I’ve heard plenty of bad stories of children with Duchenne also. I’ll be lucky if I see one in 6 months. That is an awful lot of uncertainty especially when I am trying to complete my degree at college.

    Regards
    Gerald

    DCMGerry
    Participant
    Posts: 13
    Joined: 16/01/2011
    #78663
    Re: Possible MD

    The thing is Gerald, even when you do see a neurologist, they can’t offer you any treatment for MD. I see my consultant once a year and it is basically a 5 minute affair with him asking me how i am getting on, are things getting worse etc. I also get an ECG every 5 years to detect any weakening of the muscles surrounding the heart.

    I will let you in on some gossip Gerald. ;) My previous GP didn’t like the consultant neurologist (he had been one of her teachers during her training.) and mockingly told me once what a waste of time neurologists are. She said you have these doctors who are the brightest and most intelligent in the business but for all their intellect, when they diagnose a condition relating to the brain they can do next to nothing about it! :o

    I have mentioned before, i am not bothered about a “cure” for me now but have my hopes pinned on medical science helping both my daughters who are Becker MD carriers. That is to say they will run a 50% chance of having effected sons.

    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #78664
    Re: Possible MD

    Ranald

    If you don’t mind me asking a few questions, how are you? have you deteriorated much since diagnosis? Another thing is do you do much exercise etc to counteract the MD or is there any point to it?

    Another thing that worries me is that there is absolutely no correalation between dilated cardiomyopathy (weakening heart) and skeletal muscle involvement. I suppose one of the positive ways to look at that is that at least there are a lot of options and ways of treating heart conditions. They are certainly a lot more advanced than in neurology. Still though, being diagnosed with a two serious illnesses is a lot to take.

    Regards
    Gerald

    DCMGerry
    Participant
    Posts: 13
    Joined: 16/01/2011
    #78666
    Re: Possible MD

    @ranald wrote:

    The thing is Gerald, even when you do see a neurologist, they can’t offer you any treatment for MD. I see my consultant once a year and it is basically a 5 minute affair with him asking me how i am getting on…

    It always amuses me how the consultant at the annual appointment does that “can you squeeze my hand?” thing, in theory to see whether my hand grip has got any weaker. How exactly the consultant remembers the strength of a hand-squeeze and can sensibly compare it with last year I’ve never known…

    It sometimes can seem as if appointments with consultants are a complete waste of time. I decided that was the case back in my twenties and didn’t go to see the consultant for years. Looking back now, I think that was a mistake. However frustrating it may seem, and even if they can’t seem to do much for you, I think it is worth keeping in touch.

    petered
    Participant
    Posts: 564
    Joined: 24/01/2011
    #78665
    Re: Possible MD

    I don’t do any exercise now Gerry, i have more or less given up.

    When i was first diagnosed in December 2003 i was working as a bus driver and the shifts made having any kind of exercise regime very difficult.

    My loss of employment and divorce in 2008/9 kind of knocked the wind out of my sails and i have more or less given up on life.

    I did start swimming at the end of 2009 but became frustrated by the cramps and what a hard slog i found it and quit that by about September 2010. I spend most of my time slouched in an armchair staring at my lappy, not very healthy but i don’t care any more.

    Yes, i have noticed considerable deterioration in my physical condition since my diagnosis but even from a couple of years before that when i was a London bus driver and living in digs i was still able to walk up stairs. Now i would avoid stairs full stop.

    One of the most upsetting aspects to me is the memories of 5 mile cross country runs in the morning before breakfast and then working all day before hitting the pubs at night, that only came to an end in 1998 and the inability to break into a run in 2000.

    I guess i am at the difficult stage now, feeling very awkward using two crutches but still not really in need of a wheelchair. I feel so uncomfortable going outside now that i usually find a reason not to, i am definitely in need of some sort of professional help from someone in mental health, i have taken backward steps in more than the physical i think.

    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #78667
    Re: Possible MD

    @ranald wrote:

    I guess i am at the difficult stage now, feeling very awkward using two crutches but still not really in need of a wheelchair. I feel so uncomfortable going outside now that i usually find a reason not to…

    It’s a tough stage, I know. I walked with a stick for a number of years, but it became more and more difficult, I was more and more likely to fall, and I found myself in a situation where I was just going out less and less. At one point I became virtually confined to the house.

    Everybody’s situation is different, I know, but personally it was when I finally decided to accept that my walking was never going to get better and that a wheelchair could actually increase my mobility rather than restrict it that things did start to improve. I don’t have the arm strength to propel myself very far, but started off with a bog-standard manual chair in which I could go out with friends or family, and eventually graduated to a powered chair in which I can (mostly) get out and about on my own if I want to. It was a struggle for me to accept that I needed it, but in the end it did open up possibilities that I hadn’t had for years.

    petered
    Participant
    Posts: 564
    Joined: 24/01/2011
    #78668
    Re: Possible MD

    That sounds pretty much how it is for me Petered. I was the same about picking up a crutch for the first time but once i did, it was nothing like as bad as i had imagined.

    I really like the idea of using a manual wheelchair but with NuDrive http://www.tga-electric.com/product/nudrive that way, i will still be getting some exercise and not “giving up” as i see it when i could still manage to propel myself. (i hope) ;)

    I am definitely going to enquire about it in the near future, i can still get about on my legs but i feel anxious all the time in case i fall.

    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #78669
    Re: Possible MD

    Update:

    Well I got the CK test results back and guess what, they’re very high, how high I don’t know, but I think its really the fact its too high that matters. Definately hard to say I was surprised given all the symptoms I have. My GP is pressing the neurologists to speed up seeing me. Should have some idea of an appointment date shortly.

    Gerry

    DCMGerry
    Participant
    Posts: 13
    Joined: 16/01/2011
    #78670
    Re: Possible MD

    Here’s hoping you don’t have to long to wait.

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #78671
    Re: Possible MD

    Hiya guys

    Mind over matter…..have a bottle of wine you will probably fall over? if you are use to drinking a bottle of wine you wnt..

    Julie
    Participant
    Posts: 8
    Joined: 07/09/2010
    #78672
    Re: Possible MD

    @julie wrote:

    Hiya guys

    Mind over matter…..have a bottle of wine you will probably fall over? if you are use to drinking a bottle of wine you wnt..

    Being the exception to must rules, I’d fall down without the wine but not after the wine!

    I used to say I could trip on the pattern in a plain carpet :D

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #78673
    Re: Possible MD

    Got the date today. Only a week and a half to wait, thankfully. Should know a lot more then. :)

    DCMGerry
    Participant
    Posts: 13
    Joined: 16/01/2011
    #78674
    Re: Possible MD

    @dcmgerry wrote:

    Got the date today. Only a week and a half to wait, thankfully. Should know a lot more then. :)

    :)

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
Viewing 20 posts - 1 through 20 (of 26 total)

You must be logged in to reply to this topic.

Keep in touch