Those diagnosed have no where to go but MS Society message boards, asking for advice from those that believe in the diagnostic system, their pain and their own symptoms are very real, but in my opinion ALL have been misdiagnosed.
e
They are accepted by others into this exclusive club, they are welcomed so warmly. but bottom line is, hugs and kisses is not going to help anyone.
The MS Society have it s wrong as the Scientists Doctors MS Nurses and Neurologists
"ms" does NOT exist
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
new to this site
16 Dec 2013 at 5:47PM
Hi I'm new to this ms thing, and I do feal very alone, I've
had a year and a half of doctors and neuros doing tests on me, to
receiving a letter in the post saying that I have ms, I see my neuro a
few days ago and she said I have rrms and have to start injections and
have a lumber punched done, put me on some pills and sent me on my way, I
start injections in the new year, I'm very scared and confused about
the whole thing, I'm a mum of three very young children, I work and look
after my mum, I don't have time to be ill I feel alone, as my family
don't know what to say to me.
17 Dec 2013 at 4:26PM
Sending you a big (((Hug))) I don't have much advice but I know this forum seems a great place for support. Take care
18 Dec 2013 at 2:04PM
Hi Lisa & welcome to the forum.
You're definitely not alone in what you're going through and there will always be someone to help, advise & sympathise with you every step of your ms journey.
You sound like you've got a lot of responsibility on your hands. You must have gone through an incredibly scary time recently, but now you have your diagnosis & you'll be starting meds so hopefully you'll feel like you've turned a corner.
I've also got 3 children, the youngest is 3, so I can understand the terrifying thoughts that initially race through your head. Reality can often be a lot tamer.
Feel free to PM me if you ever need to chat & I hope the New Year brings you a better year
Jane xx
You're definitely not alone in what you're going through and there will always be someone to help, advise & sympathise with you every step of your ms journey.
You sound like you've got a lot of responsibility on your hands. You must have gone through an incredibly scary time recently, but now you have your diagnosis & you'll be starting meds so hopefully you'll feel like you've turned a corner.
I've also got 3 children, the youngest is 3, so I can understand the terrifying thoughts that initially race through your head. Reality can often be a lot tamer.
Feel free to PM me if you ever need to chat & I hope the New Year brings you a better year
Jane xx
Hi Lisa, most folk here know what it`s like to feel the way you do.
With all this going on, you are going to have to ask for help, with your kids, your mum and yourself.
MS takes it`s toll and I do hope you have a supportive network around you............good luck luvvie.
pollxx
With all this going on, you are going to have to ask for help, with your kids, your mum and yourself.
MS takes it`s toll and I do hope you have a supportive network around you............good luck luvvie.
pollxx
18 Dec 2013 at 5:33PM
Ahh thankyou every one for your .messages, but I'm the person
that people come to for help, I'm not one to ask for help as I've
always been the strong one, I work in pharmacy for a living so im so use
to being the one that helps everyone. My family are the world to me,
but they don't understand me or ms, .my partner just blocks it all out,
so I can't even talk to him about any of it, I'm thankful I found this
site, it's nice to know I'm not the only one. So thankyou u again.
18 Dec 2013 at 9:36PM
Hugs Lisa
I'm so sorry for your diagnosis and it sounds like you're having a tough time with your family situation. It can be hard for the people around us accepting that we are going to change and some of the symptoms we are experiencing they can't see. There's a loads of information booklets on this website some targeted at children to help approach explaining that mummy is ill and may not be able to do everything she use to. I hope in time your partner is ready to read some of these things and talk to you so he can understand. MS is not the end of the world, people still have long fulfilling lives, but there does need to be some adaptation. With every knew symptom we have to change to accommodate.
I'm sure there are going to be loads more questions that pop up in time, but we're all here to help support you. Take it easy, coming to terms with the diagnosis can be difficult. Take each day as it comes.
Reemz
X
I'm so sorry for your diagnosis and it sounds like you're having a tough time with your family situation. It can be hard for the people around us accepting that we are going to change and some of the symptoms we are experiencing they can't see. There's a loads of information booklets on this website some targeted at children to help approach explaining that mummy is ill and may not be able to do everything she use to. I hope in time your partner is ready to read some of these things and talk to you so he can understand. MS is not the end of the world, people still have long fulfilling lives, but there does need to be some adaptation. With every knew symptom we have to change to accommodate.
I'm sure there are going to be loads more questions that pop up in time, but we're all here to help support you. Take it easy, coming to terms with the diagnosis can be difficult. Take each day as it comes.
Reemz
X
19 Dec 2013 at 8:49AM
Thankyou reemz for your wise words, I just hope I don't lose
anymore of my memory, as I have short term memory loss due to the ms, it
happened so fast that I feel like I've lost this year, I had my son 8
months ago, and it feel like I've miss a lot of him growing up due to
being unwell alot of the time. It
doesn't help that his unwell and most of his life his up and down
hospitals, I just want a break from everything, I'm so busy all time
that I'm missing the important things. Thankyou for listening.
Sending you hugs, Lisa. I'm on the verge of a diagnosis (MRI
soon for either ms or functional neurological disorder) and mum to a 5
yr old. I really empathise with the short term memory loss as I have
problems in that area too.
Learning to ask - and accept! - help from others can be difficult for some. Perhaps by learning to do this you will grow from it. Be open to receiving help; you know how good it feels to give it, so realise that others will feel a benefit from helping you.
Keep your focus on what you love in life and be kind and gentle with yourself. Have a lovely festive holiday xxx
Learning to ask - and accept! - help from others can be difficult for some. Perhaps by learning to do this you will grow from it. Be open to receiving help; you know how good it feels to give it, so realise that others will feel a benefit from helping you.
Keep your focus on what you love in life and be kind and gentle with yourself. Have a lovely festive holiday xxx
19 Dec 2013 at 1:09PM
You are so right in what your saying about help from others,
but it's so hard asking someone to help, it feels like I'm giving in to
the ms, and that the ms is winning, I wouldn't feel like myself if I
just sat back and let's other help me. I have to fight this on my own
for the sake of my babies, no one around me understands my pain or how I
feel. I look after my mum my children and patients in work, there's no
one to look after me, so that's why I joined this site to talk to people
that understand what I'm going through. I hope you don't have ms
because you life just changes right before your eyes. Thanks care hun
and merry Christmas lisa.
19 Dec 2013 at 10:37PM
Hello Lisa
Welcome too this lovely forum. You will get lots of support and advice from a great mix of people.....and lots of laughs
I was just recently diagnosed in august....its a big shock isn't? I just try to take it one day at a time. I know what you mean about accepting help from others, I'm quite an independent person and usually the one helping others. I'm now having to accept more help.....its a big learning curve and I'm not always a good pupil lol
Your wrong to think that asking for help is giving in to the ms Lisa. Your at the start of your journey so take it slowly and be gentle with yourself. Hopefully one day soon you'll realise that ms is not something your fighting but its just part of who you are now.
((((((hugs))))))
Noreen
Welcome too this lovely forum. You will get lots of support and advice from a great mix of people.....and lots of laughs
I was just recently diagnosed in august....its a big shock isn't? I just try to take it one day at a time. I know what you mean about accepting help from others, I'm quite an independent person and usually the one helping others. I'm now having to accept more help.....its a big learning curve and I'm not always a good pupil lol
Your wrong to think that asking for help is giving in to the ms Lisa. Your at the start of your journey so take it slowly and be gentle with yourself. Hopefully one day soon you'll realise that ms is not something your fighting but its just part of who you are now.
((((((hugs))))))
Noreen
20 Dec 2013 at 12:21AM
Thankyou Noreen for your nice words, but ms is already a big
part of my life, I've been to hell and back theses past 18 months, I
come so close to death giving birth to my son, my son was born with a
heart problem due to me having ms. So ms will never be a part of who I
am, I will always fight it as its took so much from me already, I will
not let it take anymore, I have ms ms doesn't have me, that's how I feel
about it all. I think as time goes on and I understand it alot better,
that maybe one day I will ask for help. But thankyou anyway, have a
great Christmas lisa.
20 Dec 2013 at 1:02AM
Hi everyone I know it's late but I'm up with a teething baby
and my mind is ticking over, my ms nurse said she is putting me on rebif
injection after Xmas, and I was wondering if anyone has been on this
injection, and had any bad side effects, I hate needles and I'm scared
of the thought that I have to inject myself, Im more scared of not being
well enough to look after my babies. So any information would be a
great help to me. Thanks lisa.
20 Dec 2013 at 1:57AM
Sorry Lisa, Hope I didn't upset you. I can't help with the
rebif question, I'm primary progressive so not on medication. Teething
babies......thankfully my two are now grown up lol. Have a wonderful
Christmas xxx
20 Dec 2013 at 3:53PM
No your ok blossom, I was having a bit of a bad day sorry if I
was to harsh.. I'm still very new with this ms, I need to start
listening to people if I want to move on, so sorry again lisa
20 Dec 2013 at 7:19PM
Hello Lisa
You weren't harsh, so don't worry about that.
Regarding injecting yourself. I'm a qualified nurse so used to giving injections but I had to inject myself with methtrexate for arthritis. Initially I was nervous about it but the nurse went through it all with me and supervised the first one. I'm sure once you've done a few you'll start to feel more relaxed.
xxx
You weren't harsh, so don't worry about that.
Regarding injecting yourself. I'm a qualified nurse so used to giving injections but I had to inject myself with methtrexate for arthritis. Initially I was nervous about it but the nurse went through it all with me and supervised the first one. I'm sure once you've done a few you'll start to feel more relaxed.
xxx
20 Dec 2013 at 9:22PM
I hope so hun, it just the thought of doing it makes my heart
race. The ms nurse said she will teach me how to do it and how to look
after the injection site. Ive got to suck it up and deal with. So
fingers crossed I don't get any bad side effects.
21 Dec 2013 at 12:38AM
Hi Lisa
I don't know if you've noticed but there's a link on everyday living talking about the rebif injection.....thought you would find it of interest.
xxx
I don't know if you've noticed but there's a link on everyday living talking about the rebif injection.....thought you would find it of interest.
xxx
21 Dec 2013 at 4:43AM
Ahh thankyou so much for all the information, I don't feel so
alone, have u got any advice on a teething baby that won't sleep for
him mummy lol, I've had no sleep for days, feel like a robot lol.
21 Dec 2013 at 8:27AM
When mine were young I used bongela. Don't know if you can buy it now. One day these will all be happy memories lol xxx
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