Newbie diagnosed with MS today

Ha ha, Izzybell, your post has made me laugh out loud and prompted me to pull my finger out and tell my parents.

Over the phone as we live 150 miles apart and life is very busy.

The deed is done, my mum and dad both took it as best at they could at the time. I reassured them throughout the phone call. My mother told me not to dwell on it, put it to the back of mind and not look it up on the internet as it will make it worse. I did tell her that thats bad advice as I want and need as much knowledge as possible to be best prepared for future possibilities. Its not like looking up a random bunch of symptoms to self diagnose. I had to keep telling her I had been diagnosed but its okay. Perhaps a little in denial.

My dad, I could hear in his voice that he was worried, a short chat and he quickly passed me over to my mother. He noticed my poor walking skills when we were were out walking the dog a year or so ago.

They will be fine in the long run not nice, now I am a little worried for them. They will get over it though.

I have also told my boss (I knew he wouldn’t be an arse) and I work for local government and I have been humbled by the support offered to me.

Its all good. I think I processed the possibility of having MS when it was first mentioned to me during tests, I was emotional and angry for quite a while.Then I was angry with myself for being so emotional and angry over something that hadn’t been realised yet. Perhaps i’m still in shock from the diagnosis? Time will tell!

Wonder if the Mamas and the Papas ‘California dreamin’ going round in my head is relevant in any way. Probably not.

Nikki

Hello !!! Go you zombie.s !!! Glad it worked out !!! Next, the world !!! (Maybe too much caffeine and lidl chocolate hobnob alternatives…) Take care Andy

Hi Nikki,

​MS isn’t necessarily a life sentence. At all. Whatsoever. In any way.

When I’m feeling down I have a list of heroes that I turn to. They all have MS, they all manage to have amazing lives where the MS is just a small factor… So - Beccy Huxtable (Radio 1), Fiona MacTaggart MP, Alan Osmond (the Osmonds), Jack Osbourne (Ozzy and Sharon’s son), Mark Lewis (solicitor who took Rupert Murdoch and The Sun to court over phone hacking).

There are loads more MSers who don’t mention it. At least half of my friends don’t know that I’ve got it and I was diagnosed 5 years ago.

If you need support or information there is lots around (here, the helpline etc).

Hi nikki

firstly I would like to say sorry about your dx,

but way to go girl, you are a fantastic role model,

keep positive and be strong my love

kind regards

heidi x

Thanks Heidi,

I used to do meditation, I think that has helped me maintain a positive attitude during times of stress. Made me into a stronger person. Although I no longer practice meditation, it has taught me a lot about self awareness and coping strategies.

I have not flipped out, I have not got angry, I have not got emotional, no knee jerk reaction (apart from promising myself a backpacking trip though Asia next year), just carry on, enjoy life experiences a little more. I feel like I’m lucid living, connected to life, more aware of self and others.

I’d recommend trying meditation for anyone who is struggling with coping with life.

Nikki

Hi Nikki,

good thread and as you’ve seen some very positive posts on here.

I’m 53 dx June 13- my main issue is the constant MS hug and a left leg that only works between 80- 30% of its previous ability depending on how tired it is.

I have always been sporty - including 3 marathons in 2010. It was after an 8 mile training run that my initial symptoms developed.

Anyway, this is all just context. Mentally the hardest thing for me is adapting my previous attitude to physical challenges.

i used to just push myself until I finished but now that creates payback. We’re all different but just monitor you’re fatigue. You’re obviously busy but my advice is ensure you get sufficient time to rest. I always recommend “Do what you can , while you can” - a backpacking trip - with sensible planning sounds great if you can.

My wife and I are very fortunate. I’m retired and we live on a yacht, this summer sailing in Sweden. One day I will probably have to move back onto land but fingers crossed only because I’m old and infirm not the MS.

It took me a while after the shock of DX to accept it is a journey but personally knowing the enemy is better. I have gone for. Full disclosure with family and friends and everyone has been great.

Good luck

Adam x

Hello Nikki

How are you doing …so sorry I didn,t respond to your post but glad I mad you lol

Sadly my aforementioned grandad decided now would be a really good time to finally find his much longed for peace bless him and so have been camped out at nursing home until he peacefully passed away Wednesday … he was 95 years old with all his own teeth and full head of hair ! (He is actually my x husbands grandad so sadly no genetic link as MS would be in remission quick smart …) . Thanks heavens for steroid induced insomnia / energy that gave me the oomph to be there with him and that he didn’t know about my DX…

Good on you for taking the plunge and telling parents …how have you/ they been since ? Love your plans for backpacking trip …I think one if the things I have taken from the last few weeks is to seize the moment and make the most of every day …after all none of us know ( regardless of MS or not ) what the future holds so I intend to stop dreaming and start planning

Steriods have helped and I am walking less like a a drunk crab in stilettos , although still frequenting the "women’s " section in the supermarket …but apparently steriods will continue to help over next few weeks ( still buzzing ) so am still hopeful for a full recovery …and then can look at DMD to keep the bugger at bay and get back to work …and in meantime if I have to sit in garden and rest at least I am soaking up the vitamin D And sporting my first tan for years

How are you faring …have u met with MS nurse yet , looked at dmds e.t.c ?

Anyway I hope all is well with everyone on here … Adam I am green with envy at you living on a yacht…sounds wonderful

Izzy x

Hi,

Adam, the yachting lifestyle sounds idyllic. Sailing round Sweden, how lovely, always fancied a cruise round the fjords and going right up into the Arctic circle to see walruses and polar bears in the wild.

I’ve read about the MS hug and fortunately have not experienced it. I can empathise with the leg issues and the impact it has on a previously active lifestyle. Totally agree that knowing the enemy is far more beneficial than the unknown. MS is just a part of our life journey, presenting different challenges, thats okay, a positive attitude helps us to accept and adapt.

I’m really good thanks Izzy, experiencing minimal pain at the moment, just minor frustrations with active activities. Sorry to hear your grandad has passed away, a difficult time. 95 is a good innings, my grandad was 91 when he left us, again, head was full of his own teeth (only half a head of hair). I can imagine the steroids helped with the energy needed through an emotionally draining time.

My parents took it as well as they could. I don’t think they are that worried as they have not called me since I told them (we are not a really close family anyway). Backpacking, yes, it is in the tentative planning stages at the moment…accommodation may end up being slightly better than the average backpacking experience. Last time I went back packing (2013) I think I was probably the oldest person in the hostels!

Seize the moment, dreams can become reality. Get your ducks in a row :smiley:

Your drunk crab in stilletoes description made me laugh. I describe myself as a newborn giraffe when my coordination is crap and the legs do their own thing (or do nothing). I have not heard from the MS nurse yet! Sent my neurologist an email about DMDs, his reply was ‘The government advise to not offer DMDs unless there has been 2 significant relapses within 2 years’ So no, he is not going to offer me any, I wonder if I even have MS, even though he has confirmed it by email, that is it…nothing else…no offer of support… no MS nurse contact as yet…really peeved off with the system at the moment.

More emails next weeeeeek…mentally with the MS I am great, incredibly annoyed with the crap system and physically i’m good.

Nikki