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What do you think?

Im diagnosed with PPMS. My MS nurse has said that because of my sporty background since about 8 years old and throughout my life ( Im now 56). This could be the reason that the progression is so slow. In fact at some points it almost feels reversed. My bladder and bowels are back to nearly normal. I am now in control rather than it contolling me.

Anyone else experiencing similar conditions.

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I dont know the answer to that one Scudger. But im really pleased that you are doing so well. Shes probably right . Enjoy it while it lasts . Michelle and Frazer xx

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I don’t know whether the ms nurse is right or wrong Terry, but I say well done you, make the most of it for as long as you can.

Pam x

Whos Terry. Im not.

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Oh sorry Scudger…can I just say it’s been a hard day, knowing you will understand.

Pam x

Oh sorry Scudger…can I just say it’s been a hard day, knowing you will understand.

Pam x

Oh sorry Scudger…can I just say it’s been a hard day, knowing you will understand.

Pam x

See what I mean, sorry.

Pam x

Hi Scudger

our stories with MS have some similarities but I am a few years ahead of you. I was diagnosed as PPMS in 2012 (or 2011 the actual diagnosis seemed to take eons). After the usual spasticity in legs and left arm with appalling balance and steady loss of sensation (light touch, vibration specifically), from the classic big toe to sternum that progressed over the diagnosis period I stopped progressing in late 2014. By mid 2016 my balance was greatly improved, gait improved and generally feeling quite ‘normal’. Sadly, I’m not. Still get fatigued After minor physical activity, a short walk etc, still spasticity in legs but still there as is the sensory loss, permanent I imagine. But, after a frank discussion with the neurologist who was able to offer Tecfidera to RRMS only, we decided that the recovery I could evidence plus the loss of same senses over my abdomen just within the 12 month limit was a relapse-suddenly I was DMD entitled and ‘category’, changed to RRMS. He was very clear that this was the same sensory damaged pathway just not repairing quick enough to save the nerve itself.

I really don’t know if MS is different across the varieties, if you read the St Bart’s blog, they very much hold that it isn’t - just that the categories are broad groupings made up from the wide spectrum of what MS does to every one of us in different ways. I had a brain MRI, oddly to provide a 'baseline ', as Tecfidera is provided on a trial, although this scan was a year after I started. Still waiting to hear the result. It may be that MS has been busily shredding my brain reserve and simply hasn’t wiped out anywhere that would show symptoms as yet. All my lesions were in my spinal cord, so they tend to show symptoms pretty quickly.

I have to say, initially, the PPMS label, plus the diagnosis of MS was a bit of a shock. The change of label was initially made me think more positively, especially with being able to try a DMD- we are brought up to think there is always a medicine we’ve can take, and that by doing so we are, ‘doing something’, as oppose to nothing. For friends and family too, after hearing of the change lots of disappointment that actually, whilst definitely ‘better than I was’, I haven’t recovered to anything like where I was before. Get me physically tired enough and I am back there with the staggering upright-ish, ‘controlled falling’, slo-mo version of walking.

So I am really pleased to hear you are doing well and have recovered somewhat, maybe if you keep like that you will get a change of label too?, which maybe will be good for your mindset and if you want a DMD. Just keep in mind what my neuro offered, that remyelination has occurred, whether what caused it is still going on somewhere currently not showing is unknown. Maybe the DMD is keeping me relapse free, maybe I would be anyway. I have got to the headspace that I have MS, category, and future prognosis unknown, and that I should get on with life and enjoy it? I am definitely doing that now, whilst checking out my pension arrangements for the first time ever, and slowly renovating my home to future proof as much as I can, downstairs wet room in planning stage, extending downstairs (not in the loft as I had imagined), when I can afford to.

Wishing you the very best

Sian

Hi Sian I was originally diagnosed RRMS Feb 2016. Nov 2016 that changed to PPMS. I was never given any DMDs which is probably just as well. When first diagnosed my balance and dizziness were terrible. Now that has improved 90% as have my bladder and bowels. My worst symptom now is fatigue and looking after my girlfriend who has Dementia. People say that stress makes MS symptoms worse but being a full time carer and stressed to the max looking after Dee I have to disagree. Being stressed has no effect on my MS symptoms.

Hi Scudger.

I can’t comment on what your MS nurse has said but in my experience symptoms can still ease off and return despite a diagnosis of ppms. My bladder and bowels are normal at times, occasionally I’m doubly incontinent and at other times I go into urinary retention and need to self catheterize. As for other symptoms most don’t go away but their severity can vary. I’ve been told that stubbornness plays a role and believe that as I have a spinal cord injury which should have left me paralyzed but I’m still mobile.

Whatever the cause, I just try to make the most of what I can do and find ways to manage new ways of doing the things that initially look impossible. It’s good to hear that some of your symptoms ease up too.

Cath

Hello Scudger.

I haven’t a clue but enjoy it while you can.

I’ve had a reprieve with my eyesight due the the weird effect of my anti-depressants. I’m not reasoning, I’m just grateful.

Steve

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