Hi all,
New member here, but not new to MS.
My mum got diagnosed in 2016 with PPMS, her only real symptom was pins and needles in the legs probably a few years before. This was initially dismissed by the doctors until she had a stroke and unfortunately led to the diagnosis.
My dad became her carer and quit his job to look after her and to be honest its been hard for us all.
Last year everything got really bad, she ended up in hospital a few times, coming out worse every time, until eventually she passed away because of complications from the MS which was heartbreaking.
Around the same time as her being in hospital i developed weird symptoms.
Buzzing in legs/feet whenever tilting my head forward or walking too far, twitching randomly in no specific place, waking up with a numb hand. Weak right leg and weak left arm. A little before the symptoms started my whole body had a rash/spots which the doctors couldn’t explain. (Which have since gone)
I didn’t want to tell my mum or dad because with everything going on at the time i didn’t really want them to worry.
Fast forward a few months and i went to the doctors (who took it seriously) and ordered an mri.
The results came back as “a few bilateral callosal, pericallosal and subcortical deep; white matter high signal change, Overall appearances and characteristics are highly suspicious for; demyelination”
Everything else came back normal including spine mri.
And refered to neurology. Doctor said not to panic but that it could be MS.
So obviously now im panicking thinking the worst while still trying to come to terms with what happened to my mum.
And if you’ve read this far then thanks.
Hi Bramble. I know from my own experience that witnessing a relatives experience of MS sends the mind and emotions into overdrive and fear about your own future. My Dad’s sister had MS and after her husband eventually found he couldn’t look after her at home she then spent many years bed bound etc. in a nursing home - eventually dying from ‘complications’.. I used to visit my Aunt in the nursing home and saw what it could do.
So, when I was diagnosed I definitely feared the worst. However, my aunt was diagnosed in the days before disease modifying treatments. When I was diagnosed some 19 years ago there were 2-3 treatments since when many many more have become available and they are significantly more effective than the early ones.
I’m on one of the early and generally least effective ones (Avonex) and yes I have problems walking ( anything more than 10-12 minutes without any aids ( stick etc) is a real challenge and I do experience bladder urgency but overall and now retired I’m doing OK. I do my share of housework, some work in the garden etc, Struggle a bit in hot weather ( a common symptom) and prefer to be in the shade etc but e.g going to plant some geraniums later today.
All this is a long way of saying definitely do not assume what happened to your Mum will happen to you, everyone’s experience of MS is different and ‘ new improved ‘ treatments are in the pipeline . I can imagine that your Mum’s stroke could well have made the MS worse so, kind of obvious thing for me to say but especially for us MS folk we all need to keep fit and healthy, exercise etc ( I tend to follow the recommendations put forward in the Overcoming M S / living well with MS website)
( I never told my parents about my diagnosis until it became obvious that I was walking with a limp. By that time my Mum had died and sort of ironically my wife and I spent 3 years or so helping to look after my Dad in his last years - an MS patient as a carer!)
As Hank says, even if it is MS, it won’t be your poor mother’s MS. The world of treatments has changed and you would have a much, much better chance of staying better for longer. Much better for much longer, with even a little bit of luck.
For what it’s worth, I’ve had highly active RRMS for 25 years and in a couple of minutes I’m going to be heading down the stairs to take the roasting ratatouille vegetables out of the oven because I can smell that they’re ready, and I’ll be doing that under my own steam and probably go down a further flight to get the clothes out of the tumble dryer in the basement while I’m at it. And we went for a lovely walk in the woods this morning, me with my two hiking poles, admittedly. Without the modern and effective DMDs, I wouldn’t be doing any of that, that’s for sure. No one knows what lies around the corner, but today is good and I’ll take that.