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Progression

I know everybody is different and its hard to say but how fast does ppms progress. Im seeing neuro tomorrow. Up until now have had pins and needles and charlie horses in calves and thighs as well as the odd body jerking but have been able to walk about 2 to 3 miles on a dsily basis today however after gardening for a while my legs felt really weak. Im still in process of diagnosis.

There is no answer to “how fast does PPMS progress”. But why have you picked on PP as opposed to the other types of MS?

Mainly my age 68 this year and pins and needles charlie horses and a bit of weakness in both legs ive read that if you get disgnosed with ms in later life its usually ppms x

I think I mentioned to you about the ‘Snowflake’ label for MS, we each have our very own version of it and there’s no way of predicting it’s path.

For example, I actually became a fitness instructor and I’d easily had symptoms for at least five years before starting on that path I stopped teaching my classes a couple of weeks before I was diagnosed as I was hoping to find out about my MRI (I believed I had a trapped nerve!). My diagnosis made me realise the danger of my chosen hobby and I never fully recovered so I didn’t/couldn’t go back to it. I’d had a couple of years of very random walking difficuties that’d just come and go. I remember quite specifically on an occasion, I taught two classes at the gym then whilst walking back to the car and I ended up leaning up againt the glass window of Pizza Express for several minutes (until my right leg started working again)… bizarre when I could still seadlift myself into the pose in my profile pic.

Five years on, I’m an EDSS 6.5 and I’m aged 47 for a couple more months. I don’t use a wheelchair full time just yet but do need crutches to stand up.

My only advice to you is to try to stay fit and active for as long as possible. But please don’t push yourself too hard and be careful if you’re effected by the heat (Uthoff’s phenomena).

None of us can predict exactly what MS will do to us. This was the blog I wrote about it: Pole-dance - an unexpected life-saver - my MuSh

Sonia x

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Thanks Sonia its so sad you must miss your fitness training l know l miss my gym classes terribly l have been exercising since my 20s and going to gym classes and aqua classes for 10 years sometimes 4 times a week l feel broken now and cant fill that gap xx

Hi Kingsnorth,

I agree with what Sonia says as in the fact that we all have our very own version of MS and there’s no way of predicting it’s path of when, how or how bad it will affect us.

I myself have PPMS but was only diagnosed with it in 2015 but by then I’d already suffered with so many symptoms dating back a number of years previously.

I’m 46 now, not sure whether that’s classed as young, old or just the norm but I’m just trying to take each day as it comes as I (and probably many others) just never know how each day will be.

This forum certainly helps as there’s usually somebody around to offer much needed support or, and adivce.

Take Care

Twinkle Toes x

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Hi Sonia,

Just had a read of your blog, yet again another amazing blog by yourself :slight_smile:

Oh what I would of given to be able to Pole-dance back in the day in the first place lol nevermind before this horrible disease struck :-/

I used to enjoy walking, dancing and exercise but alas that is no more and now I can only try to remember how it was and watch (with my trusty walking stick by my side) all these young uns (even oldies) in awe of them being able to do so… MS sucks :frowning:

Twinkle Toes x

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I read your blog Sonia what a story you must have had amazing abs. I saw private ms neuro today and after doing usual tests said l dont show signs of ms but if l want l can have an mri. How he can tell l dont have ms by a few neuro tests l know not. I am due to see him in August on N H S and will ask for mri then as something is causing symptoms. I looked up his qualifications and he does specialise in ms so who knows.

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Thanks lovely, yes I miss the way I could walk, not just walk but ‘slink’ in heels!

Some of the best times I had was wih my oldest students, they had about ten years on me and we’d cry with laughter!

Sonia x

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A lot of MS physio is about being strict with yourself and repeating the exercises. I now have a pot where my abs were but I can still feel them. I know I’d have been chairbound if I hadn’t found it when I did and thanks for the feedback

Sonia x

xx

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