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hi new here
hi
my name is natalie im 23 years old. been loosing muscle mas since the age of 15/16 maybe even before not sure really memory not as good as it used to be. well, anyway after six years of loosing my muscle mass (gone from sixteen stone to about eight stone now) (i used to be built like a brick s**t house as i worked on a farm and ran or walked at least ten mile a day before this all started) and being told constantly that i was depresed and there wasnt much else wrong with me, i was finally refered to a neuroligist. i have had an EMG, MRI, Echocardiogram and blood tests done. And im scared. since the first appointment with the neuroligist in april iv lost more muscle mass and am finding my joints keep dislocating so have to wear supports most of the time. i am walking on my left ankle and my right foot is twisting aswell. im just so scared at the moment as to what will happen on august the third. eysight and hearing are deteriorating aswell. anyway thanks for letting me share,
nat in april iv lost more muscle mass and am finding my joints keep dislocating so have to wear supports most of the time. i am walking on my left ankle and my right foot is twisting aswell. im just so scared at the moment as to what will happen on august the third. eysight and hearing are deteriorating aswell. anyway thanks for letting me share,
natRe: hi new hereWelcome to the forum.
Feel free to browse, chat or just vent.
It sounds a difficult time for you.
Have you tried the main MDC site. There is a
newly diagnosed section and lots of other
information.http://www.muscular-dystrophy.org/newly_diagnosed
Or just simply ask a question. One of our
posters will have an answer for you."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: hi new hereHi Nat
Welcome to TalkMD!
Glad you have found this fab corner of the web – of course I would say that
Seriously though, it is a great place to find info, read and share experiences and have a good old natter/rant as the mood takes you.
Best Wishes
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: hi new hereWelcome Nat. As everyone has said, plenty of info here and lots of people to listen so stick around
Re: hi new hereThankyou everyone. just got to get through next couple of weeks. at least i may finally get some answers then. its just hard not to worry when your mind and your body are always on the go and the meds just make you tired but dont really do much. i had a look at that link and its right even whe you know whats coming diagnosis wise it still will be shocking when you finally get the diagnosis. thankyou
Re: hi new here@skel2 wrote:
Thankyou everyone. just got to get through next couple of weeks. at least i may finally get some answers then. its just hard not to worry when your mind and your body are always on the go and the meds just make you tired but dont really do much. i had a look at that link and its right even whe you know whats coming diagnosis wise it still will be shocking when you finally get the diagnosis. thankyou
As we say it is always a difficult time.
The main point is that you are in touch with the specialists who are the ones
who can help and advise you.An exact diagnosis sometimes takes a time. Do not be upset if you you are
only at the start of the process. There are 64 different types of MD."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: hi new hereHi to you all. I have just joined and i have been reading some of the posts. It remindes me just what it was like for me about 18 years ago. We had a son and for a long time we kept asking the medical experts what was wrong, they just replied nothing is wrong he is just a little slow he,ll catch-up, because he could not walk very well and could’nt climbe the stairs or even jump. after five and a half years of pestering the hospitals they did a blood test, i think it was just to show us they were doing something for him. The test results were deverstating for us to learn that we were right all along and he had DMD. To any one who reads this DON’T let this totally take over your life, yes it is hard to start with but believe me it becomes part of your normal life and live it to the full. we did have another son 7 years later and he did have the same my first son died 2 years ago on the 11th august just 2 days befor his 23rd birthday although we new it would happen it was still very deverstating. Our other son is nearly 19 now and we do everything we can for him to achieve his goals and he is very happy. He is currently living independantly from us as this was one of his goals although he has 24 hour care, but he’s independant from mum and dad, it is hard for us to do this because you just want to protect them all the time but you have to let them live their lives the way they want to they know their own limits. Just to let you all know i think that the advances they have made in the last 18 years has been fantastic and although it will be too late for my 2 sons the possible cure they have found is a huge step in the right direction so just keep the support going and thousands of sufferers will benefit greatly.
Re: hi new herein a way the NHS doesnt want to spend money on diagnostic tests when its just alot cheaper to fob you of and leave it at.
Went to see my Nurse yesterday and she said she thought that it was time for me to have a wheelchair for going out in when i do shopping etc. Kinda told her to get lost and that i wasnt ready to use one yet. She called me a stubborn git and that i should just accept my fate. No way not yet.Re: hi new here@skel2 wrote:
in a way the NHS doesnt want to spend money on diagnostic tests when its just alot cheaper to fob you of and leave it at.
Went to see my Nurse yesterday and she said she thought that it was time for me to have a wheelchair for going out in when i do shopping etc. Kinda told her to get lost and that i wasnt ready to use one yet. She called me a stubborn git and that i should just accept my fate. No way not yet.Goodness what a big step.
Well said you.
This is a big step. Shouldn’t they look at other options
first?Why not a Rollator, the four wheeled walker which is a support and
a movable portable seat too. Here in Bristol we have a “Life” centre
where you can go and try out various options before making such
big decisions."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: hi new hereI completely agree that there are probably other mobility aids that would be a better option for me. I would love to have the chance to try some of them out to see which would help me more. Its just a case of finding a way for me to try them. Resources for disability equipment are very thin on the ground here in Basildon, Essex
Trying to tell my GP or nurse is kinda like walking into a brickwall. They just expect you to do as your told but I am not like that, i try to question everything they say to me and I am not afraid to say no if I feel that their decision is wrong. It helps that my adopted bother comes with me to all appointments, so he helps alot.
The thing is the NHS isn’t getting better its getting worse and this is not going to change. They should put people in charge of the NHS who have to use their services everyday. Then the system might improve!!!Re: hi new here@recoveryman wrote:
Hi to you all. I have just joined and i have been reading some of the posts. It remindes me just what it was like for me about 18 years ago. We had a son and for a long time we kept asking the medical experts what was wrong, they just replied nothing is wrong he is just a little slow he,ll catch-up, because he could not walk very well and could’nt climbe the stairs or even jump. after five and a half years of pestering the hospitals they did a blood test, i think it was just to show us they were doing something for him. The test results were deverstating for us to learn that we were right all along and he had DMD. To any one who reads this DON’T let this totally take over your life, yes it is hard to start with but believe me it becomes part of your normal life and live it to the full. we did have another son 7 years later and he did have the same my first son died 2 years ago on the 11th august just 2 days befor his 23rd birthday although we new it would happen it was still very deverstating. Our other son is nearly 19 now and we do everything we can for him to achieve his goals and he is very happy. He is currently living independantly from us as this was one of his goals although he has 24 hour care, but he’s independant from mum and dad, it is hard for us to do this because you just want to protect them all the time but you have to let them live their lives the way they want to they know their own limits. Just to let you all know i think that the advances they have made in the last 18 years has been fantastic and although it will be too late for my 2 sons the possible cure they have found is a huge step in the right direction so just keep the support going and thousands of sufferers will benefit greatly.
Hi Recoveryman,
Welcome to the forum.
Wow, what a devastating post. Thanks for bravely sharing.
This is the reality of DMD in very human terms. We have been recently
discussing the film “inside I’m Dancing” where the main character
has DMD and memorably goes through the process of Independant
Living. Superb to hear your son is doing just that. Well done to him and
all those who have supported him.
We have been joyfully posting this week on recent advances in the
study of this pernicious disease so we applaud your selfless and
optimistic view on the future.Once again welcome to the forum, please browse, chat or ask questions.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: hi new here@skel2 wrote:
re very thin on the ground here in Basildon, Essex
Here is a similar try out disabled gadjets centre in Essex…..
It is in colchester, but cannot be that far.
http://www.northeastessexpct.nhs.uk/Health%20Services/independent-living-centre.htm
"Even if you are not paranoid, it does not mean they are not out to get you!".
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