Hi everyone , Lately when I have been walking for about 20-30 mins with a little incline , my legs have been feeling very heavy and harder to lift up to walk. They start to drag a bit. This is also happening after 30 mins light excercise in the pool.
I have just been recovering from the last relape and wondering if this is the new base line??? Although I have felt tired legs in the past they have never felt this leaden and hard to lift up with each step. Climbing stairs is also harder.
It affects both legs the same. I am not DX yet only possible. I have had 4 separate attacks but only one clinical sign . The neuro is looking for a new lesion to satisfy the mac donald criteria for dx. The clinical sign is showing a spinal lesion but could not be seen on the MRI.
Is this symptom something that others with MS can identify with??? Will it improve over time??
And is this related to the hyperreflexes and ankle clonus??
Hi there. Hope your weekend was good.
i can relate to what you are saying. I can only tell you from my own experience and from what my Neuro told me. So here goes;
i had a flare back to back last year and the second time my legs were more affected then the first. They were (and still are) just as you described. Sometimes they get sooo bad that I just can not pick them up becasue they feel like lead! Literally....So, I have to sit down where ever I am at that time....Yep! I have sat down on the bottom shelf of the Vacuume isle at Wal Mart before....Lol
My Neuro told me (Now this is me..I can not say this will hold true for you) that the deficits that I have now w/ my legs are not going to get anybetter now....He says that becasue it had been a while since that last BAD Flare that by now if they were going to get better they would have by now....Hope I am making sense :)
I am sorry that you are having those problems w/ your legs because honestly.....It is a bit scary to me sometimes! I hope you get some answers soon.
what has the Neuro said about this? Have you reported this to him so that they can have it charted nin your file?? AND...you may want to jot it down on a notepad at home w/ times/ and dates/ and what you are / where doiung.
Perhaps you could get on the Cancellation list so that your appt can get moved up a bit....When I have an appt that's to far off for my liking, i call about once a week to see if there are any cancellations.......99% of the time I get in much earlier.
While you are wairing though, I would put a call in to the nurse this week and have her to note in your chart what has been going on. She may touch base w/ the Neuro and then he himself may have you to come in earlier. If not...well at least it is noted in your chart!
Wow! 6 months? That is a while...But I can not say if it will get better or not. Has it gotten any worse or pretty much stayed as is? I try and do gentle stretches at night before bed....Does it help??? i don't think so as I still get the "Lead" legs..Lol
I know that it is good for you to stretch though to keep those muscles and all .....well..stretched ;) I can say too that I have some days that are worse than others also. How about you? Do you use a cane?? on really bad days If I HAVE to go out I will use my hover round <<>>
I forgot to add on my first reply that I can NOT even walk for 30 minutes w/ out Lead legs! Now that is really Yukky :( Then after I have laid down for a while...when I get up, sometimes they feel like Jell-o....I can't really explain it...Kinda weird though...
Yes I know the jello legs very well. It use to be just jello but now the lead legs. I dont walk far on my own so usually hubby holds my hand and I lean on him till I get to the car. How long can you walk??
Actually it has got worse since the last relapse in jan. Is 6 months a long time?? I had a relapse in Aug so never recovered properly before the Jan one.
Please tell me how long its been for you since your relapse that made your neuro think it would have got better by then. Is it less than 6 months?? Dont worry about upsetting me I would rather know what time frame to expect improvement rather than live with unrealistic expectations and then if it does get better after that then it will be a welcome surprise. I know everyone is different but as your neuro seems to think a certain time past would be unlikely to improve, I would like to know.
I agree with you about the yucky legs. I hate the feeling cos they are usually trembly as well......horrible.!! Then I keep telling myself off for over doing it and swearing I'll not do it again.....that is untill the next time LOL.
I can't help it though. I love walks in the gardens on a sunny day LOL.
By the way I am on the cancellation list already :)
Yes! I do have have (1) spinal Lesion C-SPine). Annnddd, Hooray that you are on the cancellation list...Now...just give them a little call once every week or so :)
As far a s a time period and the legs gonna stay thought....... I would say it was about a good 6 months or so! But again, that's just me.... :)
Also, I do not thnk that this is an uncommon thing...just perhaps one that is maybe on their #2 or #3 of theor list of MS ***** symptoms so they really don not speak of it much???? I don't know the answer really....... I DO KNOW, it is one of my BIG problems....."Oh those darn legs"....
It really makes me sad sometimes because one does not realisae how important their legs are until one day that they can not do fopr you what they should.........Oh I long for the days of just Strolling through the mall (walking). I look at others both older and younger than myself and think of how lucky they are just for the slightest little things such as walking around, jogging, hiking, dancing, ...ALL the things that I used to always do.
Anyhow MistyLee, We to will get through this! Keep positive thoughts, and as silly as it sounds I am just glad to be able to get up and wonder (off balance..Lol) around the house using legs......I just can not walk for ANY LENGHTH of time...without legs going on strike!! Big Higs to you <3 and let me know if you get an earlier appt....
And agreed on the stretching.....I guess it kinda helps...if not, at least it can't hurt right?? Lol
I know exactly how you feel because I am getting the exact same symptoms as you. It has gotten progressively worse over the last 17 months. I DO have a lesion on my spine between T9-T10. My legs are definitely worse on hills/inclines and they feel very stiff, heavy, and weak. My legs get so weak that it almost feels like I walk like someone who has cerebral palsy when I get really tired going up hills.
Right now I am listed as either partial transverse myelitis or clinically isolated syndrome for MS (even though my symptoms have never stopped and they are progressively getting worse). I can't get in to see my regular neuro again until September (that's his next available and I've already been waiting since late March - and I am on the cancellation list, but it never helps). I found an MS Center in Denver (thanks to Quix) that I am able to get in by late July.
After posting on here a few times, it does seem that there aren't too many people like us, but I'm not for sure.
I'm hoping that I don't have PPMS.
Hopefully we will both find answers soon.
Thanks kelly for your reply. Yes I have spasticity as well so it makes sence. I am going to discuss this with my neuro and see what he says.
The going up an incline like you is too hard, as is any water resistance for any length of time. Also going up stairs is VERY differcult. One flight and I am done!!
I am going for a walk today ..(Physio wants me to excercise every other day) on the flat as I want to see how long I can walk normally before I have problems . Then I can use that as a base line to see if I improve or decline in ability.
I will let you know my time for walking.
Also I exercycle with no resistance LOL cos as soon as I turn the resistance on the lowest increment.....bang, legs fail and can hardly turn peddles. Physio wants me to turn resistance on for 20 secs every so often to strengthen legs....if only she knew how hard that is for me.....can manage 10 secs but the speed is about a snails pace.
I understand that I need to strengthen legs but some days its just not worth the aching trembling heaviness that is often the result. My problem is I use to be very fit and I find it hard to do just a little and want to do more.....Case of the mind willing but the body ain't cutting it!!
Tonya I am so feeling the same about the mall thing. Wish I could stroll the shops for a couple of hours with my 16 yr old daughter. Now its 30 mins and then coffee. Spending the last 5 mins of the 30 mins thinking of nothing else but.....omg I got to sit down!!!
Thanks for the big hugs and the encouragement!!! Not feeling so alone with this now :)
I have trouble with walking and it gets to feeling like I'm walking in cement. This happens after only about 15 mins at a slow pace. on an incline it would only take about 5 mins.
5 years ago I could walk longer. Now I get wobbly legs and tremors, i guess, they real hard and wide kind of trembling. I do make myself use the treadmill for 10 mins most days at a real slow pace.
it is frustrating that most my friends like to walk and can walk fast and longer then I can, and most are 10 - 20 years older then me. I do use a cane. needless to say i don't often go walking with friends. I rarely even get to the store. I stop in easy fast places like gas stations and dollar stores. I can't stand in one place long either without having the same problem.
Yes, I have spasticity, too. I'm taking Baclofen for it. I used to hike all day long, but now I can just go for minutes, not hours anymore. And when I'm finished walking/hiking I feel like my legs are all shaky on the inside, like I've just worked out for hours and hours.
When I go up inclines, I also often hear my foot dragging. The soles of my shoe(s) I can sometimes hear dragging.
How did you get to see a physio? Did your neurologist offer to send you or did you ask?
I am glad that there are people on here that can relate - so, Hello! to you all. :-)
Kelly my DR reffered me . I was unable to rotate one leg...ie couldnt look at the sole of foot or move leg out or in without pain due to tightness of muscle. Getting in and out car differcult as well as turning in bed with out pain.
Any quick movement caused extreme pain/spasm. They spotted the weakness....and been going to the hospital physio for 3 months now.
Ok went walking . Managed 20 mins before tiring and by 25 I was done.Started tripping up and dragging legs.
Up an incline I dont think I could do more than 10 mins slowly. I am better on the flat.
Sorry it's taken so many of us so long to respond Mistylee. My calendar is a mess with all the appointments and reminders on it for a three week period. Today starts week two and I'm beat already.
I did want to add my name to the list of fellow sufferers. Last summer I realized there was something more to my troubles than just being out of shape. I got a dog and planned to walk once or twice every day to build stamina. We did walk. After four months I still struggled to make it a mile.
The warmer the weather the shorter my stamina. The last stretch to home usually had me taking short steps on a wide base. I had to start using a walking stick to help my balance. I'd collapse in a chair once I made it home and needed to rest for several hours. Several times I had to stop and rest so I could make it home.
I did a little better this winter. My legs got tired walking through snow but the cold protected them from the worst of the leaden fatigue. With spring came a renewal of the difficulty you describe, except now I would LOVE to go that measley mile. I'm real wobbly after about 100 steps ( 200 feet?) on the flat.
ANY incline and I'm done. Up or down are both bad but up is worse. I don't have to see a hill My legs tell me immediately when I've left the flat. There's a small hill in our back yard. It makes me feel like I'm walking on a moving escalator. My legs (sorta) move but I don't seem to get anywhere.
I understand your frustration, worry and concern Mistylee. I'm not seeing this getting any better. I don't expect it will now that I've been diagnosed. I do think I'm developing some spasticity now. Maybe that's what's keeping me from crumbling to my knees somethimes. I've not had a thoracic MRI so I don't know about any lesions.
I walked that mile at the Walk for MS. I SO MUCH wanted to make a second pass around the track. I just knew my desire would outpace my ability. I'm sad to have lost what I took for granted for so long, not long ago. I hope you get some improvement.
I didnt respond not because i dont relate but because of "Is this symptom something that others with MS can identify with??? " i never know if i should respond or not.
A few things i think you should focus on is, if the issue is being exaserbated by doing too much at the moment and the other thing is pace over time. I'm thinking that your muscle tone sounds like its getting weaker the more active your trying to be. Quix explained it to me once, to para phrase, the more you try to force your self the harder it will become.
I was also falling over a lot, with out warning my feet seemed to be stuck in place as my body continued to move as i wanted it too, and down i'd go. If i remember right it was to do with speed of the message and speed of movement.
Over the last 12 months i've gone from not being able to walk with out assistance to wakeboarding, within that time i've got better and then gone backwards, got better and gone backwards, thankfully i didnt go back too far. One thing i'm very aware of is when i do too much, yes i can get a few minutes of wakeboarding in but it takes weeks to recover. Imediately after i've pushed my self, i'm back to not being able to walk unaided and the spasms and tremor are ragging, fatigue rediculas, muscles so weak i can hardly hold my body up but i can still smile, i trust its all temperary, i trust!!
If i look back on the last 12 months i cant believe how far i've come, not perfect but compared its beyond good. By 6 months the level of improvement was huge but still had a long way to go to get to where i am now, i can honestly say it took at least 9 months to understand what i can get out of my self but big notible changes have really only happened in the last few weeks, after the fatigue lifted i feel lighter lol. I see what i can do more than what i cant.
I do recall a pretty big discusion about all this with Quix, my executive functions are not letting me work out how to find it, sorry.
Hi supermum and twopack , thanks for your replys. I think your right JJ about....the more I do to try get stronger the harder it is.
I will try and find that discussion with Quix . Did she say what the best approach to it is??? Like should I do less and just give it more time . Is it harmful to walk constantly until you reach the point where it takes days to recover. And if you dont do much will that just make you weaker??
I am joining in this discussion on the later side, better late than never. I have trouble walking any distances, especially hills or up stairs, my legs often feel heavy and lead like, or weak and jelly like, heat makes it worse for me.
When I take the stairs I find that I almost trip as I am going up them and it seems really hard to lift my leg up to the next step, they feel heavy and if I go up a couple of flights my legs sometimes get shaky when I get to the top.
I have Transverse Myelitis, my neuro tells me this is from my spinal lesions (T10). I also have hyper reflexia, clonus. I have weakness in the neuro exam when they do the strength testing, I can't hop on my left leg, it won't lift off the ground, but I can on my right, I can't do the walk thing with one leg in front of the other, I find that really difficult, but I am not sure what that means.
Recovery from an attack can take as long as two years but usually if no recovery at all has happened in the first 3 to 6 mths it is unlikely.
You really do need to get back and see this neurologist ASAP. I hope someone cancels soon.
What i got out of all the discusions was, to only do as much as my body lets me, not to go beyond because it takes away more than adds. Not sure that made sense, but i was constantly pushing for just a little bit more, and what i expected was to get stronger but what happened was i got weaker.
I ended up doing 5 minutes of strengthening exercises morning and night, with additional stretching multiple times a day, not getting hot or feeling like i was exercising. Then i added 2 minutes every week, but i still dont do more than 15 minutes at a time, after the 15 minute mark everything gets harder and there is no point of trying to do more, it just doesnt work. It does take patients, sometimes i really wanted to do more but when i did it became 3 steps forward and 2 back every time. And then there are the days when just getting my body up right is more than i can do, so i'd let my self off the hook, weight it out and start from scratch again.
I do think its harmful to walk constantly until you reach the point where it takes days to recover, though i think its more detremenal to your mental health and from the possible damage from any falls you may have. Mentally its hard to keep getting back up, it makes it easier to see loss than what you've still got, and for me it felt like it was never going to end.
I've always been a believer in brain plasticity, the way i look at it is that the repetition is equally and or in some instances, even more important than endurance, re-wiring! That will not happen over night, it takes time, a lot of time and sometimes acceptance that this 'is' as good as its going to get. Today i can do more, walk better for longer but i still cant do the supermarket yet, or even walk continuously for 30 minutes, short bursts give me no set backs and thats a huge improvement.
I asked a similar question to yours soon after joining here. Quix gave a really nice explanation about muscle weakness vs early muscle fatigue (with a neurologic cause). I managed to locate it this morning and bumped it to the top. Here's a link too.
Thankyou everyone for your thoughts. I think maybe I should stop before I get too tired so I can do more the next day rather than overdo it and be unable to do anything for 2 or 3 days.
One thing I did get out of this is I am going to ask the PT for a report from her to give to the neuro which will tell him their findings of weakness etc which will be better than me trying to explain it and will carry more weight.
Also what Quix says makes sence. It is early fatigability as oposed to weakness.
The only worry about it all is ...will it improve??? Praying for that.
Thanks again everyone. Will let you know how the neuro appt goes.
Sorry I'm so late to the party. Just wanted to wish you the best and say I've been where you are. I do not have any spinal lesions that can be seen but my neuro assumes they are there due to my symptoms.
As for the early muscle fatigue, my physical therapist always tell me NOT to "work through it" especially during a relapse. Her advice is to do my stretching and exercises until the first sign of muscle fatigue, even if it's only 2 repetitions. Her reasoning is that pushing the muscles while there are not getting the proper signals only does harm to the muscles.
As for "will my old strength" come back - I was told 6 months out from the relapse is where most improvement is seen. However, there are exceptions such as JJ and I believe saveone, who also had some amazing recoveries.
Just wanted to Ditto what Ren had stated on what her PT told her...Do NOT work through it!! ANd she too has heard the same as I had stated about the 6 month improvement thing.....BUT, again that "Could" be differetn for some others...hopefully you will be part of the "Others".....
hope your day is going good..And no climbing hills....LOL
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