Hope the sun is shining wherever you are - need some advice please, or just some reassurance …
I’m still slowly recovering from a relapse in March when my right leg decided to pack up on me. It started with stiffness in the sole of my foot and progressed to a tightening/stiffness in my calf. I had a 5 day course of 500mg oral steroids which helped ease the stiffness and my walking improved from granny-like to slow and steady. Since then I have mostly had sensory symptoms which I know from experience can take ages to clear up. I know this will be a summer of discontent and impatience for me and I’ll just have to bear with it.
However, now my left leg seems to be the worst one. It started with a numb patch on the bottom of the heel. This is new as my numbness is usually towards the toes. Now my left foot feels very crampy and stiff in the middle of the sole which is making walking a bit difficult as my foot won’t flex when I walk. My calf is beginning to seize up and the leg is also tight behind the knee. I’m still using my stick for any walking over 20m as I can’t seem to manage without it but I can only hold it on the right side as my left hand has very little feeling on a good day and I drop it too often!
Oh, any my hands are playing up again. I’m not too bad on a proper keyboard but when I’m on my laptop I keep missing letters and the spacebar because I’m not hitting the keys properly as my fingers are too tingly. That’s a bit of a problem when my second job is typing in the evening for financial advisers and shed loads of typing has come through this week I may have to ask my boss there for a proper keyboard that I can plug into the laptop …
I’m hoping that it’s just because I’ve been favouring the left leg because the right one has been the problem one but as I was on the mend I’m not sure if I’m just trying to make excuses and convince myself. Is it possible for a relapse to switch sides after all this time? Has anyone else experienced this?
You’d think that after 4 years I would be an old hand at this MS malarkey but I still feel a bit of a newbie at times and it’s only my 4th official relapse so I’m still unsure what’s what at times.
Any advice gratefully received. [Yes, I know the old chestnut about resting but that’s not an option right now. I still have 5.5 weeks left at school before my 6 weeks off (hallelujah) when I can have a really good rest, and I have already promised to bake at least one cake tomorrow for my local MS Society branch’s Cake Break so no lie in then either - these things never happen at a good time]
Hi Tracey, don’t really know is the short answer! I had a relapse that started on one side and spread to the other side. Like you said it could be due to your altered gait, can you contact your neuro/GP about getting some Physio? I’m sure your mss won’t mind if you buy a cake or even forget one altogether, maybe bring two next time?! Hope you get some respite soon, you seem to be having a hard time of things. I know how you feel about not being able to rest, kids,jobs and life in general tend to get in the way! Do speak up though and ask for some help, we can only do do much! Laura x
Hi I had my first relapse which affected my arm, face and hand, about 5 weeks later my left leg and then right leg played up. On the basis of an mri in jan my Neuro said no new relapse, although a different neuro said 2-3 relapses. Who to believe I dont know. Finally now in june seems to have settled. Xx
Hi T, a difficult time for you and I reckon the 'roids were the best thing at the time.As for a relapse switching sides,my simple understanding of the mechanisms at play may provide some sort of explanation:
The immune system starts attacking the myelin sheath and this happens at the molecular level that is on a teeny weeny weeny scale down to thousandths of a millimetre and smaller.Maybe if this active site is at a place in the brain or spine were there is a ‘junction’ of nerves from both sides of the body it is relatively easy for the ‘naughtiness’ to spread a microscopic distance in the brain/spine but the effects are felt on the other side of the body.
This will be way over-simplified and hopefully somebody can put me right and explain using a pen rather than my trusty crayon.The weather might not be helping you with changing temperature and humidity
Oh,I’ve got a spare keyboard under the bed and I just need somebody to help me up once I’ve found it.
I did find time for a decent nap before my bingo session tonight. That’s my relaxation once a week (I know yoga would be more beneficial for my health but bingo gives me the chance to win cash :D). I’ve just got in and nope I didn’t win.
There’s some useful advice here.
Laura - I will book an appointment with my GP and if I am struggling by the time I get to see him, which will be at least a couple of weeks away, will ask about physio on the NHS. I’ve had to cut down on yoga since a price increase and my rent increased :-(. I do practice the basic warm-up stretches at home but daren’t try the poses without an instructor to make sure I’m doing it properly and safely.
It’s also nice to know that you and Zoe have had relapses that spread to the other side of your body and Woblyboy’s theory makes sense as a relapse affecting the legs is going to be caused by a lesion in the spinal cord so it may well be that just a few millimetres either way in the inflammation can cause symptoms on either side.
You really are a knowledgeable bunch. Cheers. I feel better just for sharing stuff that nobody else understands I’ve spent all week telling everyone I’m fine even when they are giving me that look that clearly says I don’t look fine. The thing is I feel there’s no point in explaining how I really feel because my colleagues won’t understand (or won’t care in some cases!).
Well I’ve put a pair of flat sandals on today as the weather is quite warm (at last) and I can really hear my left foot slapping the pavement. I also did quite a bit of housework yesterday as the sunshine gave me some energy but both calves have been tight and painful ever since. The house looks so much better though
I’ll have to wait until 10am to ring the surgery (urgent appointments only before that!) and try to see my GP before Christmas I’ve never seen a physio before as I’m only just realising that you have to push to get anything. My last relapse 4 years ago was a lot worse than this and the hospital were happy to send me home still walking like a granny without offering me any further support. I didn’t know any better then …
Thankfully, now I am part of this community I know a bit better about what is available. Now it just remains to be seen whether I can actually get a referral … Wish me luck - I don’t have much faith in my surgery or my local hospital (I usually have to travel some distance away to the prescribing hospital for DMDs but that won’t be much use for physio).
Hi again Tracey, glad the house is looking nice…it always makes me feel better (mentally anyway!)
If you manage to get the GP appointment and they are less than helpful, i’m fairly sure you can self-refer for neuro-physio. Probably varies from place to place, but i’m sure if you googled it you could find something in your area…might be worth a try? Like you say you know the rules now so make sure you push for the help you deserve.
I have my neuro-physio coming to see me today for the first time, hoping that it will yeild some results…just like you i want to wear my flip flops without my foot slapping all over the place :0)
Will you let me know how you get on with the physio please? I’d like to know what to expect.
I was given a leaflet about the MS nurse (had to ask for that too!) and it says there is a physio who comes out but she charges. Budget is a bit of an issue. Is yours coming for free?
As for flip flops I have given up with them now because my toes are numb so often that I can’t grip with them to keep the darned things on. It was getting too dangerous . All my sandals/shoes have to strap securely to my feet these days.
Did reply once but it’s lost with the moderators - not sure why as I don’t think it contained anything it shouldn’t!
Would you l let me know how you get on with the physio - I’d like to know what to expect. I get a little stressed at anything new even at my age!
I’m in shock as I’ve just come off the phone and have an appointment for this afternoon - the surgery had a cancellation. Good job I was already sitting down ha ha!
As for flip flops I’ve had to give them up as I can’t grip with my toes any more due to the frequent numbness / pins and needles and it was getting a bit dangerous.
Well that was a waste of time - predictably! GP doesn’t know what to do - started talking about giving me more steroids. I told him I wasn’t keen on another course of steroids so soon especially given the health risks and the horrid side effects. He says he doesn’t think I am compensating for my right leg given that the symptoms are similar to the very early symptoms that the right leg started with coupled with a numb patch in a completely new area.
So he is now faxing a letter to neuro at Addenbrooke’s to ask for his advice. He hopes to get an answer this week.
All I wanted was a referral to a physio Disappointed. Still, I should be grateful that he did at least examine me. When I had the relapse in March the previous GP wouldn’t even see me and held a telephone consultation with me!
Guess I’ll have to keep up with the bits of yoga I can remember and can trust myself to do without an instructor in the meantime.
Sorry it was a bit of a wasted journey for you, hopefully the neuro will reply with some helpful advice. Your GP’s sound awful, is there not another surgery you could move too?
I saw the physio this afternoon, it is on the NHS, she came to my house and was very friendly, asked me lots of questions about my day to day capabilites and tested my muscle strength etc. I have been given my own workout booklet with lots of moves for improving core strength and leg stength and she will be back in a fortnight to see if i have made any improvment…Guess that means i will have to do some of it!
She did say the MS Trust website has lots of exercises that you can do, might be worth a look if your unsure about poses etc…would post a link but don’t really fancy re-writing all this!! Had a quick look and it’s under exercise and MS on the website.
I hope the neuro gets back to you soon, let me know how you get on? Take it easy
Yeah, my surgery is useless. None of the GPs seem to know much about MS. Do you think it would be rude if I dropped hint about the online course for GPs ;-)?? Unfortunately it’s a small town and there is only the one surgery. The nearby villages will not take any patients unless you live in their village so it’s Catch 22. I’m stuck with trying to educate the GPs I’ve got …
They won’t prescribe anything without my neuro’s permission and, as I only see neuro once a year, this can be a problem. Still, I should see neuro in summer hols - I chased up that appointment today as I think they forgot to make it when I was at the hospital back in February and this is one year I don’t want to miss seeing him.
I’m glad your physio appointment went well. Sounds as if you have to keep up with the exercises but that’s a good thing because you can’t be tempted to skip a few days when you know she will be back to check up on you.
I will have a look at the MS Trust exercises - thank you. I have their website saved under favourites as well so I’ll soon find it.
I may have to ask my boss there for a proper keyboard that I can plug into the laptop …
I’ve spent all week telling everyone I’m fine even when they are giving me that look that clearly says I don’t look fine. The thing is I feel there’s no point in explaining how I really feel because my colleagues won’t understand (or won’t care in some cases!).
I’ve never seen a physio before as I’m only just realising that you have to push to get anything. My last relapse 4 years ago was a lot worse than this and the hospital were happy to send me home still walking like a granny without offering me any further support. I didn’t know any better then …