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assistance from my MD friends
Hello
As a few of you know in addition to muscle disease I also have a heart condition. Much debate has been made about whether the two are linked or not.
I am an active members of our local patients group for people with congenital heart disease and we are currently running a petition to have standards of care brought into practice in line with other countries. I will not obviously be allowed to post the petition here but wondered if any of my friends on talk MD might like to help us.
If you would then please let me know below or pm me and I will send you the link.
Many thanks in advance
GillRe: assistance from my MD friendsGood question, good debate.
Just like my bowel issues last year. The logic expressed there was that there were a lot
of muscles there, how could there not be at least some relevance to muscle disease. The
heart is all about muscle, even small differences can be vital.Can’t you just post the4 petition here, surely no one would mind a good cause for
one of our valued members?"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: assistance from my MD friends*puts mods hat on*
*clears throat*
As this petition is related to patient care and as it cannot be utterly ruled out that MD does not have a link in some heart condition cases .. and as whether or not it does some people with MD have heart issues and therefore the medicos need double prodding. {Have I built up a strong enough case?]
Post the link here. You made it quite clear it is not an “MD’ petition, but there are grounds for cross over.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: assistance from my MD friendshi amy. im sorry but i didnt know about your heart condition. but i was diognosed with AF or artirial fibleration. which caused me to suffer a number of TIA’s or small strokes. it was only when a student dr mentioned it in passing to another dr that they realised, people with edmd suffer from AF and there fore wacked a pacemaker in and stuck me on wartharin.
stefan
Re: assistance from my MD friends@littlestef wrote:
hi amy. im sorry but i didnt know about your heart condition. but i was diognosed with AF or artirial fibleration. which caused me to suffer a number of TIA’s or small strokes. it was only when a student dr mentioned it in passing to another dr that they realised, people with edmd suffer from AF and there fore wacked a pacemaker in and stuck me on wartharin.
Yes, I too have had several episodes of AF and am now on Warfarin for life. I have FSH MD and we didn’t know there was any connection when I was first diagnosed in hospital in 2001. Now that I’m sedentary, I don’t really notice when I’m in or out of atrial fibrillation but when I was still walking I could tell because I’d feel even more tired than normal. Having AF means your heart’s output is 25 per cent less than it should be, I believe, so if you’re struggling to walk about because of pre-existing MD as well, then having AF is not good.Sybylla
Re: assistance from my MD friends@amgmod wrote:
*puts mods hat on*
*clears throat*
As this petition is related to patient care and as it cannot be utterly ruled out that MD does not have a link in some heart condition cases .. and as whether or not it does some people with MD have heart issues and therefore the medicos need double prodding. {Have I built up a strong enough case?]
Post the link here. You made it quite clear it is not an “MD’ petition, but there are grounds for cross over.
I second that, AMG
(I’ve always wanted to say that!)
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: assistance from my MD friendsThanks to the Mod for allowing me to post this. It would be great if you could all sign.
On the subject on there being a connection between MD and heart problems. I have been told and read articles on there being a link between people with inherited condition having a higher than average incidence of being born with other congenital abnormalties and heart problems is the most common one. There is also a risk of certain types of MD having heart involvement hence other posters mentioned AF. In addition to my original problem when I see my cardio for review they look at the muscle and I have a monitor done regularly to look at my rhythm to check there is no electrical disturbance going on due to the MD.
Many thanks
Gill
Re: assistance from my MD friendsI would agree there is definitely a link between heart problems and MD. Following my appointment in Oxford I had a letter stating that my EGC showed “mild abnormalities” and I should have it looked into locally. So I have had 3 ECGs, which as far as I know were normal, done and now have an appointment with the cardiologist at the local hospital. Appointment isn’t until Oct so it can’t be urgent, hopefully. Now I also have diabetes which also puts you at risk of heart disease. I have signed your petition.
Re: assistance from my MD friendsJust thought I would so thanks to those who took time to sign the petition. There is still time for those who havent as it doesnt find until 19th October.
Been told it will be debated in the scottish parliament and we will need to preparation submissions prior to this to back up our case….aaargh
On the back of that I was interviewed by the Glasgow Herald and the story will be on page 3 on Monday…I am not sure now I feel about that yet.
I have a service meeting with regard to this on Monday too so think I may have to invest in a bullet proof vest over the weekend. Will keep you posted if I survive.
Thanks
GillRe: assistance from my MD friendshought I would post this, it is the interview I gave to the Journalist regards the petition.
http://www.heraldscotland.com/news/health/heart-defect-survivors-in-fight-for-help.18876014
Happy Reading
Gill
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