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Neil Evans

PPMS, 10,000 people in the UK have it and I'm one

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Neil Evans

Hi people, 

 

I was diagnosed with Primary Progressive Multiple Sclerosis on the 22nd Feb 2019. My neurologist believes I may have had it from birth. Can you guys with MS and in particular PPMS give me advice please and 'Problems me and my wife are going to experience with our journey with PPMS'

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Stumbler

hi @Neil Evans and welcome. I'm sorry that you have been given cause to join us on the Forum.

 

OK, some advice. Learn about your condition. I can see that you have started your research, having found us. But, avoid Dr Google, who can find all manner of horror stories that have no context. Stay with creditable websites like the MS Society and MS Trust. The following link is a booklet by the MS Trust :-

 

PPMS Booklet

 

This is just one of a number of booklets, that can be read online, or ordered in hardcopy at no cost.

 

There is no definitive path that MS takes. We're all different. MS doesn't like to follow rules!

 

But, generally, live healthily, eat healthily and avoid stress. There is a lot of anecdotal evidence that stress can be the cause of adverse MS activity.

 

Otherwise, get on and live your life. A good philosophy to follow is "Prepare for the worst and hope for the best."

 

For my part, my first definite symptom was back in '85, although it probably started a lot earlier too. I'm SPMS now and still here. Don't get me wrong, life is now somewhat challenging, but I was never privy to the extent of information that is now available to help you manage your MS.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Nick

Hello Neil,

 

I think John has said it all!  It is indeed a matter of 'discovering' your own MS and NOT assuming that, while symptoms may be similar, the future path that YOUR MS progression takes is really always an unknown.  I have SPMS and a bit like yourself have probably had the condition most of my life, while in my case a diagnosis was only made 10 years ago.  I am however still learning about MY condition and when diagnosed had no idea about anything MS and had no idea about just how long it takes to get 'aquatinted'  with my new self.  

It's difficult to talk about 'positive attitude' when you are first diagnosed, just when the bottom has fallen out of your world, however the power of building up new resources to mentally defend against depression and gain better understanding can't be overstated. This takes courage and time. Knowledge about yourself and whats 'good' and what's 'bad' for the effects of your conditions, helps build an armoury of support. This in turn will give you some resilience.  Things will look very different in a few months and it will be a bit clearer for you.  Finding this site helped me and knowing other people in the same boat and sharing experience can be extremely useful.......it just takes time

 

Nick 


Just another Warrior...........

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Sluggish
Shirl

Hello @Neil Evans

 

Welcome to the forum. MS diagnosis comes in as many ways and takes many different lengths of time to confirm. After that comes the 'education system'.  As @Stumbler & @Nick have said, use trusted sources. This forum is one of those and we all value the advice we receive from the MS Trust. It can be overwhelming at first, the feeling that life has now changed forever. Logically, it is the same as before you knew why you were having symptoms. 

 

So, what is your journey with MS going to be? To be honest, we don't know. Each of us experiences similar issues but the treatments that we respond to are not always the same. Recognise you have a hidden condition and take as much time as you need to become used to this new label. Then remember, you are still a unique human being with the same personality, loves and dislikes. How you have dealt with all that has gone before is a good template for how you will cope with all that might be ahead of you.

 

Develop a good working relationship with your GP surgery, your neurologist and MS Nurse, if you have been appointed one. Keep a little diary of symptoms, questions, medications... it will always be helpful to have this to look back at when attending appointments or filling in forms. 

 

But chiefly, as it indicates in the motto beneath my signature, today is the one you need to get through, to enjoy, to rest, to seek help when needed. One day at a time is all anyone can cope with.

 

Keep in touch with us and get to know your way around the wealth of information available in the Resources section.



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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