Hello

Everyday living
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I am new on here my story is i got diagnosed with MS in June 2019 and was then told in November 2019 it is PPMS. I was 48 years old when i was diagnosed i had numbness and weakness in both my legs. Now I also have stiffness plus the so called Hug and slight weakness in one arm and hand the list goes on.

I have been reading a lot of your posts on here which has really helped me feel that i am not alone but for some reason I have never been brave enough to join in with all you lovely people.

I always seen myself as a positive person a little miss sunshine but living with MS totally knocks the stuffing out of you and I am more like little miss miserable so I am trying accept the person i am now and let the light back in.

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Hi Little Miss, I don’t like to prattle on too much, but I’ve had similar symptoms building up over the past 14 years since diagnosed and in the first 2/3 years I had no symptoms at all, but started with a slight limp in my left leg. This was the slow start to lots of left sided problems and I only found out it was SPMS after asking my ms physio about 4 years later.

The only remedy that works for my leg/foot cramps is CBD oil whether it’s hemp oil or genuine cannabis oil (only available through specialist suppliers).

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Thank you so much for taking the time to reply to me foghorn Yes I will have a look into the CBD oil I am on quite a high dose of Baclofen for the stiffness and most of the time feel like little miss Tin woman

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Hi Little Miss

Sorry about your diagnosis, but glad you found us and you’ve been reading the posts as there are a lot of knowledgable people on this site.

You can always do a search in the box top right too.

This MS Society has a lot of information top of the page About MS and Care and Support.

Look after yourself.

Jen

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Hi you can get CBD oil through most pharmacies in different strengths, take care

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Hi Little Miss,

I reckon that all of us (with MS or similar and with no known condition) have similar cycles of positivity and negativity. I also think that this can be useful as it exercises our mental capacities and our adaptability. I may be full of crap but this is how I feel!

I also really appreciate this forum which gives me a safe place to shout about the bad stuff and to share and celebrate the good stuff.

Fingers crossed that you feel a bit better soon.

Mick

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Hi Little Miss and welcome to the world of PPMS. I have a warning, from personal experience…

whilst baclofen is a good drug for reducing spasticity, taking a high dose can cause muscles to weaken too much and falls can ensue.

I was on it and reached 70mg a day., before I found relief. Just take care chick.

Boudsx

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Thank you all so much for all your reply’s I am truly touched by how everyone gets together to help

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Hi little miss :slight_smile:

I’ve had rrms for over 6 years (nearly 7!)

I’m 33, so a bit younger than you , but I’ve got many sorties to tell tell of my experiences

If you ever want to chat then msg me xx

I feel your pain; it doesn’t matter what sort of ms you have, it’s a life changer xxx

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I was initially diagnosed with RRMS and that changed after 6 months to PPMS. Fortunately I hadn’t started any dmd’s. My symptoms improved over the first 2 years and have remained stable. I’m quite mobile but appear drunk to many so I now use a Rollater to save any confusion. I don’t work anymore and rely on benefits and can concentrate on myself. Good luck with everything.

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Hi Scudge, just a point I believe to be true…RRMS cant change to PPMS…it can change to SPMS.

PPMS is PPMS from start to end.

On re-reading your comment I think this is what you meant and was wrongly diagnosed with RRMS, yeh?

Keep the faith

Boudsx

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Rather like you I was diagnosed at 49 after symptoms going back several years. That was 15 years ago. You’ll find plenty of support and advice on here. There’ll be ups and downs, but there was some advice I was given back then which I’ll share with you.

Don’t put your life on hold, and try not to worry too much about what might happen, because it might not.

MS is unpredictable and we’re all different.
The whole Covid thing isn’t helping any of us who are looking for light at the end of the tunnel either.

Chin up, you can do it, you’re still you Little Miss Sunshine :slight_smile:

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Hi Little Miss, I’m 49 and was diagnosed at 25. With a 6 year old and husband working away it was tough at first because they thought I had a stroke. All my right side went weak and I collapsed. 8 weeks in hospital and loads of tests and prodding plus a cocktail of drugs to get out on 2 legs… All the drugs either ate my muscles sent me on another plain or made everything worse. In the end I said no to all drugs. Started off in a wheelchair, then a fold up walking stick. Now I run 10ks, walk 15 miles up and down hills and mountains eat a homemade diet, work full time in a fantastic job and area where no one knows I have M&S. It has taken me 20 years to post on a forum. In denial?? Guess so. I am ME and I have MS. MS does not have ME! Good luck, enjoy yourself and have No limits xx

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I am digging deep to keep my positivity up with thanks to all you lovely people :slight_smile:

its scary stuff with this Covid all around us Wishing you all every safety xx

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Poll i think Scrudger meant that the diagnosis had changed… they said he was RRMS then they changed their minds after a while and said he wasn’t RRMS he was PPMS.I think thats what he meant,forgive me if im wrong. But you are right in saying RRMS cant move on to PPMS.It can only move on to SPMS.x

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I was reading your post and it is identical to myself. I had PPMS confirmed Feb last year having had to go through an operation on my back first - to make sure it wasnt to fault. Weakness in legs, balance is a joke, intermittent pain in wrists, not to mention the MS Hug which is 24/7. Oh and lets not forget the bladder issues… yep I too try to be as positive as i can and continue to work as this makes me feel normal at least when i am sat at my desk. Stay strong and remember just because you cant do what you used to doesnt make you any less a person and your light will burn bright again if you let it.

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Yes sounds very Similar what’s going on with me to Blackhill43. I just got my appointment through for my MRI scan to look at cauda equina as my neurologist thinks there could be something elsa going on in my back. So hard not to worry and i have a lot of time on my hands to do that as i give up working last October I did enjoy my job but it was becoming more difficult also i felt like i wasn’t able to pull my weight like every one elsa . I was hoping to volunteer in a charity shop for a few hours but between me progressing and the covid I will have see how i hold out on that one. Here’s hoping we all get the light at the end of this covid tunnel take care all xx

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Hi I am an old Miss lol. a crazy old codger.

probably had this malarky since 1998. Diagnosed in 2016 february with progressive MS.

Hey ho. lots happened in between.

The trick for me to survive is to do things. Find something you enjoy are good at. You have great communication and I would say a good sense of humour.

I have filled my life with things, never have enough time to do them all. Non of them I hasten to add involve a lot of walking and outside as those days sadly are gone with the weather lol.

I started to look outside and realised wow there was a busy life going on out there. I have youtube channel WILDLIFE & HEDGEHOG JUNCTION, been taking videos through a victure wildlife camera going on 2 years now.

as its winter the hogs are off to sleep. I moved from my last sheltered so now in a bungalow which i love and its bigger and has the full advantage of 2 lovely old bonsai shaped trees outside my patio and suddenly the wild birds have come to join me. Lately I have had chaffinch, great tits, blue, yellow, wagtails (ground feeders) and every day i have a visit by the cutest wagtail it must be a SHE as she always sits in my triple pink flower pots and digs for grubs lol.

I have had foxes too and got a great photo of one reflecting in my patio window.

Then i have been asked to join the council new newsletter for sheltered accommodation in the area, and i have just written my second article. On eatiing and staying healthy in a pandemic. Its great fun.

I sponser chidren in Kenya to stay at school, and working alongside the organisers and i have managed to sort out money so the children can have food as they are orphans in Nakuru through Melon Mission. in 4 months i have managed to help 400 chldren eat and their familes, i have paid for land for six months and they are growing vegetables everyday to eat for lunch with rice and maize.

the chilidren are now back at school so next challenge was face masks and hand sanitisers. the children are usually sponserd but because of covid this has dropped off. anyway we are doing great, the little ones actually had a slice of bread each 2 days ago with their porridge and they thought it was amazing as they dont get bread like we do from a packet.

I am supportiing several people with cancer, a single mum with MS recently had a baby, so many things to do and people who need help.

I totally forget my MS lol. so much so i forgot i had a physio coming here 3 days ago lol. poor man.

Pain yes all the time but never got time to worry about it. a pain doctor said to me if you can do without dont go the route of normal drugs for MS as they wipe you out or are counter productive.

I get screaming cramp in my toes left foot and i massage or put in warm water. the MS hug i use a heat pad it helps.

I eat healthy its very important with MS. No smoking no booze just good old corporation pop out of the tap lol. No sugar only a little, no fizzy sugary pops, processed food, beef etc.

boring isnt it, but i eat very well, and have lost weight i made a goal of 10.5 and i am now 10.5 woo hoo. Now all i have to do is sort my stupid BP out. Now thats a crock the doctors say limit salt so you do then you get told your LOW in sodium get the salt shaker out lol…jeez make your miinds up.

My physio said to me the other day you will need a splint for your left foot but at the moment you have good muscel tone and strength in your right leg so he wants me to continue to walk just a bbit everyday which i am happy to do. If you dont use it you loose it lol.

ah the joys of MS. Yep i have PPMS but to be honest so busy i rarely worry about it lol. I have all my safety things in place. Never get up without my rollator. sit if i am tired, never push myself. always rest in the afternoon, and indulge in some SWAT or NCIS or someother crazy american show. actually i just watched Bridgerton on netflix FLIPPING ACE, and also second season of Virgin River.

I am always in bed by about 5pm as I am pooped and i sit and watch MASH as it makes me laugh and also makes me think just how crazy our world is. then asleep by 7pm.

thats me thats what i do. thats all folks…it is a crazy world out there. MS the challenge isnt my MS it is staying away from the NUT JOBS who think COVID is a HOAX LOL.

xxxxxxxxxxxxxx sorry have rambled on i do sadly but shows i had 8 hours sleep lol. xxxxxxx

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WOW i think you should be called spring chicken chick that’s great everything you are involved in you are making a big difference think i need to take a leaf out of your book it sounds like there is plenty of things out there if you just look i have made a small start with my bird feeder i only have the standard sparrows but they are lovely to watch if anything lock down has taught me that’s to appreciate what’s around you more so a big thank you for sharing with me your light xx

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Now weirdly enough i haven’t had sparrows lol. I am getting the posh birds lol. I use blue tit food with some grubs and meal worms which seem to attract them.

I did this video this morning to put on my channel lol.

enjoy. xxx