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Positive Message for Newly Diagnosed From Me

Hi everyone

Just wanted to send a positive message to the newly diagnosed.

I have been living with MS for 12 years now and it really isn’t that bad. I’ve had to make changes as a lot of us living with MS have, including keeping away from stressful situations, keeping cool (temperature wise I mean) and any other changes that are needed to keep as well as can be with MS. Only you will know what changes you need to make.

I have a very positive attitude and I am sure that this has helped me.

I wanted to post this thread as there is a lot of doom and gloom floating around at the moment regarding MS so wanted to reassure the newly diagnosed that the future can be good so don’t worry you will do ok.

Happy New Year!!

Shazzie xx

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That’s a good post Shazzie! I’ve had MS for about 35/36yrs. most of those years have been very manageable…so it’s definitely not all gloom & doom, you learn to adapt.

Rosina x

its not doom and gloom,but u need to learn ur tolerances,whic as we know is hard to do,we all think ,we can still do it,but be gratefull for what u can do,and dont dwell on what u cant

Good post, Shazzie!

I remember being diagnosed, and my neuro asked: “Are you a fighter Tina?”

I honestly didn’t know; what had I ever had to fight against?

So I hesitated before answering: “…Yes.”

He said: “Well, you’ll be fine then!”

I am certainly not saying mind over matter is the key to MS, and that people needing a wheelchair only do so by their own fault. Obviously, there is a limit to how far attitude can get you. But I do think mental attitude is hugely important in making the best of however badly or little you are affected. Two people can have exactly the same degree of disability or discomfort: one sits around and cries; one gets on with it! Getting on with it will always have a better result, although it will certainly not “cure” MS. I always wondered why I was made “a bit arsey”, and now realise there was a reason.

There are some things in life it helps to be “a bit arsey”, and MS is definitely one of them.

Don’t give up!

Tina

x

Totally agree Rosina, Colin and Tina.

Interesting Tina how your neuro asked if you were a fighter. I am a fighter and I think you are right that it comes in handy to be arsey.

Thanks for your replies. I’m hoping that the positive vibes will help out whoever needs a bit of reassurance.

Shazzie xx

Yep! Having, or trying to have a positive attitude really does help but when your positive attitude deserts you & you’re waiting for it to come home…be as arsey as possible …that helps too!!!

Rosina x

hi shazzie

i’m so glad that you posted this because all the media attention over debbie purdey’s passing would scare most newly diagnosed people.

it upset a lot of us (me included) because it’s a horrible situation for anyone to be in.

so chin up peeps!

carole x

Exactly why I thought to post it Carole. So pleased you get what is meant.

I was upset too and so was my youngest son who rang me while the news was on. Bless him. He was so anxious.

I’ve been really worried about the reaction of the newly diagnosed, families and friends to the suicide of Debbie Purdey.

As you say chin up and enjoy the things you can do and don’t dwell on the stuff you can’t.

Shazzie xxx

Thanks Shazzie and everyone else who has contributed, I’ve only been dx since beginning of Oct, so I am still learning This forum is an inspiration and a great help. Xx

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Thanks Cherrylips.

The forum is brill. Made some good friends on here over the years.

Shazzie xx

Anyone who thinks they can ‘beat’ m.s. is deluding themselves.

Give it a good run for its money and focus on continuing/fighting to do the things you want to do.

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Only diagnosed 4 months ago my physio keeps offering a wheelchair but I keep refusing I can hardly walk due to the stiffness and haven’t left house for over a year except medical appointments no pity please I had a GP who wouldn’t help and changed so 9 months to be diagnosed.

I use walking aids due to progressive Ms and don’t like to go out cause of falls and bladder I am putting pressure on neuro for LDN but he doesn’t think it helps so asked GP he’s doing research and will phone me this week, so I find it hard to walk and use stairs because of stiffness which is difficult got worse over the year.

Been waiting since September for a Ms nurse still nothing so far and bladder nurse seems worried neuro wanted a bladder scan that’s all but she refuses to just do that, I was on vesicare she wants to see if stopping it helps it does.

GP just started me on baclofen 15mg a day and I’m on Pregabalin 300mg a day is that max I can go? The back pain is killing me.

I am posative it came on suddenly but I want to try be normal as I can so any tips are useful it’s hard cause I want to be able to walk for long periods like I could before so I can take daughter places and spend time with her instead of being stuck at home.

Need to sleep now goodnight/morning :slight_smile:

I don’t think anyone on here thinks they can beat it but you can give it a good run for its money.

i was diagnosed about 9 years ago when my 2nd son was born , very bad year for me as had lost a baby the year before. Gave in for a while when I felt unwell during the relapse and then the positive attitude returned.

i am now 44 and my youngest son is 8. My mum died of ms when she was 44 and I was 8. If that wasn’t enough to make me think I was doomed I don’t know what would.

However I still work, luckily take no meds and have weekly oxygen. I have only had 2 relapses in 8 years which have left no major probs just some numbness and burning plus the guaranteed tiredness. who knows what is round the corner but I will continue to eat well, walk my 2 German shepherds (bought by me 5 years ago to keep me going) and do whatever I can. The path each of us follow with Ms is very different, I don’t dwell any more.

happy new year to you all xx

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Hi Sally

Which centre do you go to for oxygen treatment? I agree with you and we can do something to cope with it and try to prevent it from flattening us.

Regards

Rob

So glad you like the post Jen. I thought a positive post would be a bit more cheery than all the negative ones recently.

I am so sorry for the loss of your mum. Sorry to hear about your rubbish time Sally. There have been lots of research done on MS since your mum’s passing almost 40 years ago. This must have been a terrible time for you.

I have recently started on Rebif as my neuro said that it had recently been approved for use for people with Secondary Progressive MS that still suffer relapses (that’s me) and it seems to be slowing things down.

Fight fight fight and kick MS up the bum whenever you need to.

Shazzie xx