I have only been recently told I have MS but am waiting on a full diagnosis after some further test. My problems all seem to be from the waist down but my biggest worry is my weak jelly like legs. I walk really slowly to conserve as much energy as I can as my legs just get really, really weak and I need a lie down just to be able to walk a little again later. This has been getting worse for the last few months but it seems to have levelled out but not getting any better. Does anyone have this issue and is there a chance of them getting a little better over time with medication? Is it normal for some MSers(I think that’s what I can call myself now). Thanks in advance.
Hi there
You don’t say what type of MS you have? I have RRMS and I had a bad relapse back in 2012 where my legs seized up and I could hardly walk. That got better but for months I was left with weak jelly legs and I too got tired so quickly. I spent a lot of time stopping to sit down! However, it did eventually get better after about 7 months and then after they felt better it took quite some time to get full strength back in them. And I also think I was bit freaked out about it so I had to recover mentally from that relapse too. If you have RRMS then you may just be having a bad relapse that has now levelled off and may take some time to get better. Keep positive, be patient, a rest when you can. Lisa X
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I don’t know what type I have got yet. Having a few more tests before a 100% diagnosis. Good to hear there is some hope and I will continue to walk as much as possible and get back to swimming again. Its just horrible being 33 and feeling like im 80. Saying that tho my gran is 80 and has sorts of problems and she keeps plugging away and recently we have been going out for coffee and both moan with each other lol.
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Yes it sounds like a relapse to me. If you have an MS nurse tell him or her. They may give you steroids to help. Mine are like yours in varying degrees. Ask for advice, don’t grin and bear it.
trev
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Hi, like you all my problems are below the waist.
Way back when I was 45 (I`m 63 now) I began tripping and falling. I did have some nast arm spasms with certain movements too, but they faded way after a couple of years.
I am doubly incontinent and have medication to help, plus a supra pubic catheter…
I became a full time wheelie some 13 years ago.
I was suspected of having PPMS and the received 95% dignosis…not a 100% one, as none of my 4 MRIs, 2 LPs, 2 EMGs, VEP, plus blood tests ever proved it.
Then in 2011, MS was dismissed in favour of HSP…hereditary spastic paraplegia.
Maybe you could mention HSP to your neuro, if your diagnosis isnt certain.
pollx
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So I spent the morning looking at some static homes down the local caravan site for a close holiday home. Was going ok until about 2pm with a lot of breaks and sitting down but I was out shopping and my legs were unable to carry me any longer. Decided enough was enough and I am now having a lay down in bed. Its so frustrating, I wanted to do a lot today but by mid afternoon I can’t continue. I really hope my ms nurse referral happens sooner rather than later as I have so much I want to ask them. Boudica/Trev I will be sure to ask my nuero about them when I see him again and I have bladder issues as well but I swallowed my pride and have been wearing adult diapers for the last few weeks.Taking some meds for it which seem to be helping, I’m sleeping longer without having to get up for the loo. Just very, very frustrated today.
hi gaz
my legs are little blighters, i keep threatening them with a good slap.
i loved the sound of you bonding with your gran, it made me smile.
i don’t think there is a medication for wobbly legs,
you will be given your proper diagnosis.
if RRMS you should be offered a DMD.
these just reduce the frequency of relapses, which in turn cuts the scale of disabiity.
as for your bladder issues, get to a bowel and bladder clinic.
your gp could refer you but you can self refer.
the good news is that there are meds for this.
i tried 4 and didn’t get on with them so thankfully i was offered betmiga, a life changing pill.
take it easy, be kind to yourself and learn to pace yourself.
(there were times when i wanted to scream when someone said that to me but it’s true.)
look up the Spoon Theory as an explanation of that awful fatigue.
good luck, stay positive and come on here to let rip if needed.
carole x
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Like you I was 33 when I had my first attack. Stumbling, numb legs and feet, extreme tiredness. Thankfully that first relapse came and went in a couple of months and I was back to normal again, back playing football, golf, tennis etc - the year after the relapse I ran a half marathon.
My next attack was 6 years later and was similar to the first. The next was 2 years later.
When I was going through the first attack I thought that the world was ending. Thankfully though there was plenty of remission and good times to more than offset the crappy relapses.
derek
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Thanks for replies guys. I’m just trying to stay positive and have stayed off the net as much as possible during the bank holiday weekend just to gain some sanity. It’s good to see people have come back from a relapse like what’s currently happening to me and I think my leg problems are due to extreme muscle fatigue. I always though fatigue was about feeling really tired and needing to sleep which was confusing me as I don’t need to nap or anything like that, just laying down to rest my legs. I emailed my neurologist just to see when I can expect to see the MS nurse so now I’m back to playing the waiting game, ugh I just want to get things moving along now.