Hi all I am hoping to get some comparisons/advice as I am fairly new to being dx with MS! So… I was dx back in sep 2012 and then suffered a debilitating relapse leaving me unable to walk in oct 2012, since then I have had 3 lots of steroids, have started on Rebif, take amitriptyline and now on others meds to help with my bladder control! My question is, although since being hit with this relapse i have improved and managed to get back to work since march and I am now able to walk up to 50m (if u can call it walking!) after 10mins my legs just give up, they become extremely heavy all of a sudden and are just useless, i have to sit down for a good period of time before I can walk again - has anyone else experienced similar and still continued to improve? It’s now 9 mths since the start of this relapse can I continue to improve?! I used to do lots of walking, I miss being able to pop out to the shops, walk my daughter to school just having my independence!
I think improvement can continue for a long, long time so I do think you can still get a bit better than you are at the moment.
Are you working full time? I wonder whether you might benefit from reducing your hours and saving some energy for other things.
Hi, yes I would definitely say things can still improve. I had a bad relapse in may 2012 and it took me about a year before I could walk distances. Now my legs feel back to normal although I’m still quite mentally scarred from that relapse so I never push my legs too much. Take your time and I’m sure things will improve for you. All the best, Lisa xxx
Thank you for your replies, it’s encouraging to hear there’s still hope! I work 30hrs a week, but term time only as I work in a school - so only another 3 weeks to go until the six weeks summer hols although I will have my 4 yr old daughter to occupy 24/7! xxxx
I am counting down till end of term too! Working in schools is exhausting though.
I think I would start lining up playdates for your daughter though, preferably at other people’s houses! Do your daughter’s friend’s mums know you have ms? They would probably be happy to help, kids are always easier when they have friends round as it alleviates the boredom and you don’t have to be the entertainment.
I’m also counting down to the summer holidays. That 6 weeks makes such a difference. My relapse which led to diagnosis just over 4 years ago was also a biggie and it took me a very long time to be able to walk long distances again. Even then I would collapse with cramp and/or exhaustion and have to rest a while before I could walk again. I did get there eventually and had over 3 years where I felt remarkably well considering. I did have bad days/weeks but that just meant I had to rest up for a few days. There is still hope that you will get over this.
I had another (milder) relapse affecting my right leg in March and I’m still having problems. I’m on Rebif now so I think I have that to thank for going so long between relapses and the fact that it wasn’t so severe this time around. I’m being a bit impatient though and have just been referred for physio as I think it may help. If we ever get any nice weather I would like to get out in it and I live a stone’s throw from the beach but can’t manage a decent walk along it at the moment so would like to get active again. I know how you feel
The key to avoiding the heavy, useless leg feeling is to rest before you get to that point but I’m not very good at that either. I’m always trying to push to get that bit further as I want my legs to improve. However if you can recognise the fatigue before it gets really bad and rest beforehand then it doesn’t take so long to recover.
Thank you for all your replies, it is comforting to hear there’s still hope - but to top things off I have today attended an appeal hearing for my daughters primary school place and still had it refused! The problem I’m facing with my daughter attending the Sch we didn’t choose is that I can’t pyhsically walk the distance to get her there as there’s no nearby parking - but it doesn’t seem to matter how many times I explain this to the council admissions team we are still refused entry to the more practical and closer school to our home - I guess it’s just another pleasure of having MS some people don’t seem to care!! Sorry for the negative response - I guess it’s one of those days! xxx
I see my consultant for the 2nd time next week and I’m gonna ask about an MS physio - guessing I might have a long wait with the NHS though…
My legs get worse and heavier throughout the day and I’m sure I exhast the muscles etc. simply by walking so badly, do other people find that?
I’m usually staggering by mid-afternoon (and that’s just walking around in an office) and then my right leg won’t seem to lock out at all. I get the foot drop thing and I think spasticity in my thighs.
I stopped seeing my osteo when she gently said that she should wait for my MRI results before treating me again, she’d written to my doctor recommending I have the MRI in the first place (she is an angel!) but when I initially went to her after a fall, the treatment did still help with my walking. She said that my right hip wasn’t sitting fully in it’s socket, that’s hardly a surprise now - it was about 6 weeks ago I nearly toppled backwards down the stairs when my legs gave up and I couldn’t get my body weight forward, I was going upstairs and my legs were crumled in front of me - my step-daughter rushed over and pushed on my shoulders until I was able to put my hands on the floor in front of me so I could crawl! cringe So yes, I think some physio might be beneficial.
I was really physically active before this so I’m hopeful that a good physio might be a possibility.
Good luck, I can understand your frustrations, I’ve given up this week and I’m borrowing a walking stick at the weekend! At least people might get out the way a bit as it’s only a matter of time before I crash into somone
I have a referral to neuro physio but apparently there is a long wait. My nurse was hoping I would see the physio before I see the neuro in August so they could assess what damage I am left with after the relapse in March but that’s not looking very likely
In the meantime I have a copy of Mr Motivator’s DVD but haven’t squeezed in time to do any of the exercises yet. As well as the day job, I have a typing job working from home in the evenings and that has been busy this week (typical!) so no me time.
My right leg was the problem during the relapse but now my left leg feels cramp like and alternates between stiff and week so I think I may have picked up some bad walking habits due to the right leg being weak. My (useless) GP wanted to give me more steroids! I have been using a stick but I’m not sure if I use it properly so I wanted a physio to assess me. Thankfully my nurse sorted out the referral that my GP wouldn’t!
I definitely stagger by the end of the day, the more tired I am, the worse it gets. Yesterday I stood up at the dining table at school and almost fell over again as my hip felt like it was going to give out on me (luckily it was an inset day and the staff are aware of my MS - the students would have thought I was drunk).
I’m sure some exercise would help me to regain some stamina and strength as I have been remarkably well in the last 3 years and I’m determined to get back to walking more than 30m without the darned stick. Watch this space
I hope you get your referral, Sonia, my nurse said it was quite reasonable to ask for it and thought it would be beneficial.
Can you contact the school that your daughter has been admitted to and explain the position? They will probably be very understanding and allow you to drop your daughter off in their staff car park. I work in a high school and we do our best to ensure that safety of students comes first at all times. I am absolutely certain that the Head at a primary school would be even more sympathetic to your needs. Your daughter is not going to be safe on a journey to school with a mother that cannot walk that distance.
Please contact the Head and discuss this issue with him/her. I would bet my last Rolo on you getting a more sympathetic response from the school itself than from the County’s admissions. There is bound to be somewhere that staff park as very few staff live locally to the school they teach in these days.
Let us know how you get on
Thank you for the advice Tracey - I contacted the school today and spoke to a very helpful lady who has said that as I am registered disabled! They will be able to help, I understand they have a staff car park and will allow me to park in there and give me the gate code so that I only have to walk a very short distance when dropping off and collecting my daughter. I am going to pop into the school next week and have a bit of a tour ready for sep!
Fantastic - that’s one less thing to worry about! I do know someone else who has a similar arrangement after having a couple of nasty falls when trying to collect her children. Letus know how the tour goes