Hi all, I was diagnosed MS in 2012, PPMS April last year. For the last two years I also had terrible balance, neuro made me walk heel to toe on my first appointment and I fell over! A rubbish surprise because at that point all I’d noticed was the numbness, and stiffness-thought that was why I couldn’t walk properly-not a lot of opportunity for playing hopscotch etc once over 40! Well, the weird thing is, I got used to it, did do a bit of standing on one leg practice that the MS physio told me to, but as I was rubbish at that too, gave up on it last Xmas. But, from late January this year I can balance again, actually, as far as I can tell, quite normally! I understand the good days and bad days variation stuff with PPMS, but, nearly 4 months good?? Sort of feel a fraud, as in early Jan. had a Pip medical just for mobility, and really didn’t fake it, actually fell on the guy when he asked me stand up and close my eyes, but now I can do that easily. (Got mobility element). My walking is now so much easier as I was spending so much energy working out which way was up I was exhausted by 20 metres- now I can walk a mile. Should I just celebrate my current mobility? I worry I am not accepting the Ppms diagnosis …it keeps popping into my head, ‘maybe I’ll get better’… Sian x
Sian you’re extremely fortunate and it’s lovely hearing that someone’s symptoms improve. As far as I’m aware they don’t change your diagnosis once it has been proven that you have ms. However much you want to accept the dx is up to you. The only thing I will say is that symptoms do tend to worsen and ease with everyone experiencing different types and degrees of severity with all the symptoms which are too numerous to list. I hope for your sake that your mobility continues to improve but would hate for you to get despondent if they return.
I’d just enjoy every day making the most of the relief. I try to enjoy what I can do and accept what I can’t but my symptoms are varied and variable. My limitations don’t improve that much but I get to make the most of every day.
Cath xx
Hi Sian, I think it’s the first time we’ve seen you on this board… so welcome… and sorry if you’ve been here before… I’ve got a rotten memory. The thing with PPMS is that, like all MS types, it’s totally unpredictable. Lots of people think that once you get a symptom with PPMS, you’re stuck with it. Not so! Lesions can still stop being active, which means a symptom will improve… or our clever brains find a new route around the lesion, so again a symptom can improve. This is why the MS charities are always trying to get the benefits people to realise that MS fluctuates all the time. I think the ‘maybe I’ll get better’ feeling is pretty normal actually. I just have to have one good day and I think that. Yes celebrate your mobility… how fab for you!!!.. but keep in mind it might not last. But again… who knows??? I certainly wouldn’t worry about PIP at this stage. I read once that you should not inform benefits until a symptom has improved for 6 months… so really I think you should leave it longer and see how things go. Drop the guilt. You’ve got nothing to feel guilty about. Just wait and see for now… and enjoy your ability to walk!!! You never know, it might last. In terms of acceptance, well it all takes time… it ebbs and flows… no need to keep telling yourself you have PPMS. While you’re feeling well it won’t hurt to forget about it for a while. Make hay while the sun shines! Glad to meet you and hope you come back and let us know how you’re doing. Pat xx
Interesting to hear your experiences Sian.
Like you my balance is shocking, and I can’t stand on one leg for more than 3 seconds. Been this way for ages.
But what HAS improved hugely is my back and joint pain, so maybe Pat’s point about the brain doing weird and, occasionally, wonderful stuff does ring true.
Wow, thank you everybody for replying so quickly. I was just needing to hear from other people with PPMS that sometimes things do get better, at least for a while! As I have read often in this forum, so many people know somebody with MS and then say, “oh you’ll have good days and bad days” and then get better always referring to relapsing remitting ms. I understood primary progressive to be more, pretty much nothing will come back once its gone. This is no miracle cure, I’m still numb,still Stiff, still clumsy with my hands too, but now more random people comment have I got a bad hip or arthritis now than am I drunk! On another thread here I see you discussing fatigue meltdown. I will still get these when I push myself too far, but it is amazing with my brain freed up from continual recalculation for balance, I get these much less now. Thank you again, I guess I better go make hay! Sian x
Sian everyone here tries to support each other. MS is such a confusing illness with no two people having the same combination of symptoms or severity of them either. I refer to good and bad days as my family and friends can understand whether I’m capable of pottering around or I’m fatigued or have very poor mobility and coordination. It’s much easier than making a big deal trying to tell them which bits of me do and don’t work.
We don’t expect to go into remission but symptoms do ease or worsen at times. I can’t remember when I last felt my age but like you, do what I can when I can. I have loads of hobbies and find something to do no matter how I feel. It’s a huge learning curve, my ms nurse has offered me a course which I’m looking forward to for newly diagnosed patients where she’ll help us manage our symptoms, fatigue being one of them.
I hope your balance continues to behave, just don’t overdo things and set it off again, that’s where I tend to go wrong!
Cath xx
Hi and welcome Sian
As things crop up, I quite often remember when they were worse, my rehab consultant was very keen on ‘managing fatigue’ and was confident that there was things I could and would get back by looking after myself.
It’s lovely to hear you’ve such had a fantastic result with your balance, I remain optimistic
Sonia x
I would second every word of what Cath has said live life for now because tomorrow’s another day. I hope you keep your balance
I dont actually have an MS dx myself …yet. Although it has been mentioned as one of the possibilities. In PPMS I believd=e from what i read there are bad days and slightly better days etc. But a significant improvement in walking would be unlikely, so makes me wonder if you have RRMS instead and would therefore benefit from DMDs. As I have had different opinions from more than one neuro and GPs etc I have come to realise that neurology is a bit of a guessing game. I would go back and see your neuro again.
Moyna xxx
Hi Sian, I think Moyna makes a very good point… I wonder if you have RRMS and are now in remission… also another type of progressive MS was identified a couple of years ago… Progressive Relapsing MS. I think you should discuss these possibilities with your neuro. Certainly if it’s RRMS there are treatments that will help. Moyna, that was well spotted! Pat xx
Oh @@@!!!, I am grateful for all the responses, and advice, but…I was trying to avoid the whole I really am getting better all round stuff, as, as you have said, I don’t want to be gutted when I get worse again. saw the neuro in November, he noted no new symptoms since Oct. 12, said I was Plateau-ing, (sorry, not sure that’s a real word)… I was surprised to get a follow up appointment in early June in the post; with Frenchay shutting next week and the whole hospital moving to a new site I thought, especially having read in here post diagnosis you get a yearly appointment, I would not see him again so soon. I guess I will ask him if plateau includes actual recovery of balance. It is not just this though. I still work more than full time, and have a 7 year old that keeps me busy with nerf fights, school runs and general mini tyrant kid stuff… a year ago I would be literally crawling downstairs after bedtime story stuff, after a much more sedate day. Today, long day at work, major stressors, on feet running around 8 to 6 and still not wobbly legged or wobbly brained. A year ago this would have been impossible. Today, tonight, I am fine. So, RRMS? From what I have read, it didnt look so great to have unpredictable, random ‘relapses’, and a lot of quite serious drugs with little long term effect on overall progression. With the PPMS I know where I am, and where, roughly, I am going. I will raise the possibility with the neuro, but really, a 2 year, neuro monitored progression with steady decline, several MRIs with clean brain, but spine like the central reservation, (striped black & white), and a Frenchay high score in oligoclonal bands!? I fear, if I query the diagnosis, I will simply be deemed as, ‘in denial’. Sorry, rambling on a bit! I am grateful for your thoughts! Sian
Sian don’t worry about being in denial I got to the top of the stairlift the other day and forgot I can’t walk that was fun I haven’t walked in years but my brain bypassed all that and told me walk. I didn’t hurt myself to much as I hit the floor, I always find its the stopping that hurts the falling bit is quiet painless. Stick with the diagnosis I worked on for about ten years with gentle decline then I had to give up our son was three when first diagnosed he is 24 come August, you would think after all these years I would have remembered that I have MS wouldn’t you?
Stay in the system . Don
Oh Don, I feel terrible but your post made me cackle!! Yep, when my balance was wonky, it was only when I forgot this, and did something without thinking/remembering, I would then have the ‘interesting’, thought of, Oh, it feels like I’m falling, I AM falling, but still I’d be waiting for my body to ‘naturally’, right itself, then the ouch bit!! I’d trained myself to behave as with no balance, I still stand up and stay still for a bit, (before, giving me a while to get my ‘sea legs’), which got odd looks. now, people still give me the looks, and I feel a plonker realising I am standing still there for no reason!! Of course the day I change my habits again will be the day I start falling over again! I guess should use this period to start sorting out stuff for the whenever/ whatever stuff to come but will probably have to find new excuses for being slack on housework, diy etc. there was a silver lining!