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1896537 tn?1381900009

Jelly legs/arm whilst exercising!

Hello all, sorry I haven't been online for a while and I'm straight in with a question!!! I just wanted to know what happens to you when you exercise? I do loads of walking (at least an hour a day) with my son in his buggy and I'm fine with that (apart from my vision fogging right over) but I just attempted a ballet dvd and within 10 mins my arm and legs turned to jelly and were literally trembling. Is this because of the MS or am I just unfit?! I would have said I was reasonably fit but I just couldn't manage it so I stopped before I made it worse. The neuro made me a bit paranoid about fitness after telling me I had no issues with muscle weakness/numbness because I was able to walk on my heels/toes and hop on one leg.Does anyone else ever start to wonder if they're just a nutcase?!
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1896537 tn?1381900009
Wow, thanks for all the info Mary! I thought spasticity would be really noticable though? I actually got a letter from my neuro today regarding my last appointment. He said I have transient sensory symptoms and a feeling of being off balance which could represent minor sensory relapses and he says it's often hard to reassure young patients such as myself of the benign nature of such symptoms. He feels my sensory symptons and visual problems mean I'll run a benign course of MS. This annoys me immensely because it's like he's playing God! Of course I'd be happy with a benign MS but only time will tell. I attempted the same ballet workout today and didn't have any problems but I only did around ten minutes and I didn't do anything else (housework etc) I'm going to check that link out later too. Thanks again :D
Helpful - 0
1045086 tn?1332126422
Found it!

The physical therapist I referred to earlier is Herb Karpatkin, PT, D.Sc, NCS, MSCS.   He received his doctoral degree in neurologic physical therapy and is certified as a Multiple Sclerosis Clinical Specialist and a Neurologic Clinical Specialist.  He has published and presented extensively about his particular area of expertise (MS).

Dr. Karpatkin is a nationally recognized authority on Multiple Sclerosis and Exercise yet when I heard his teleconference I noticed he had plenty of compassion for people to match his passion for the topic.   He encouraged several listeners to have their therapists call him for help in developing individualized plans of care.  

His practice is located in NYC but I was glad to see he is still making himself available to all of us via his website and a FREE consultation service.  I encourage you to take a look and/or ask him for help with particularly tough questions.  Access is at
http://www.multiplesclerosisphysicaltherapy.com/index.html


To listen to an audio recording of a teleconference Dr. Karpatkin presented for the MS Foundation in March of 2011 copy and paste to the following page:
http://www.medhelp.org/user_journals/show/281871/MS-Foundation-links--

Once there, scroll down to the section listing audio programs and choose one of the two selections titled “Strategies to Improve Walking, Balance, Strength, and Flexibility with Herbert Karpatkin, PT, DSc, NCS, MSCS.”  The programs were presented live on two consecutive nights.  Both are available so I assume there are some differences between them.  The time allotted for Q&A would differ at the very least.  

I can’t really begin to explain how helpful this presentation was to me personally.  It will have to be enough to say this man is THE singular reason I am able to direct my foot into a shoe today without triggering the painful muscle spasms that used to spread from toe-tips to knee with every attempt.  Come to think of it, I owe him an email of thanks.  I’m going to get that done.

Mary
Helpful - 0
1045086 tn?1332126422
Ballet is all about stretching initially isn't it?  First off, I'm guessing you have some spasticity you aren't even aware of during the normal course of a day.  You need to start out VERY slowly.  

For example, exercises are often sectioned off in repetitions and sets.  The average rate is ten repetitions X three sets with a short rest between each set.  PwMS are likely to be better off starting with ten repetitions X (up to) ten sets with a substantially longer recovery time between each set.

THIS IS IMPORTANT:  If you push to the point of discomfort (and heaven forbid! beyond that) you will likely set your progress in a backwards direction.  As PwMS, we need to learn to stop just BEFORE our breaking point and (perhaps) be satisfied with a slower climb than we were once used to.

Lulu and I called in to an excellent teleconference about this a while back.  The program was given by a PT specializing in the care of PwMS.  I’ll try to find the recorded audio of the session but hope Lulu visits this topic as well.  She can probably link us to it in a nanosecond - the woman is good :)

Kyle is right about the cooling/heat factor too.  One of the things mentioned in that teleconference was the importance of PRE-COOLING YOUR CORE.  Cooling BEFORE activities like this it can help even more than cooling during the activity or after the fact.  Consistent coolness is best of course.

Don’t assume jelly legs (and other pseudo-flare symptoms) will always disappear once you cool down.  Unfortunately, we have had reports here of a few people with either long-lasting or permanent deficits following heat exposure.  With MS already causing nerve function losses it is extra important to take care to preserve every bit that remains.

Don't give up Zoe.  You probably just need to make some adjustments now to see bigger success down the line.

Mary
Helpful - 0
1936411 tn?1333831849
I'm thinking you feel it more strongly with the ballet because you're using muscles that don't get worked all that often. With the humidity, you've got a double whammy.

I wish I had an MS Nurse! No access here in Southern California, USA. At least not through my insurance.
Helpful - 0
1896537 tn?1381900009
Thanks for the reassurance. Strangely, I go power walking with my son in his buggy for at least an hour and that is quite strenuous but managable. The ballet dvd wasn't even making me remotely breathless but I just couldn't seem to cope with the stretches. However, it's been over 80 & humi here today which is fairly unusual for the UK so that could be part of the problem. It was nice & cool indoors though. These neuro's definitely read from a different songsheet to us patients! Do you get MS specialist nurses in the USA? We are referred to one at the time of diagnosis here and they're way more helpful than the neuro's
Helpful - 0
1981227 tn?1336328438
Yep, I get this jelly feeling and a the weird vibrating. I only get it with intense cardio though and after it goes away.
Helpful - 0
1936411 tn?1333831849
It's nice to see you back, Zoe. Jelly limbs is super annoying. I always have jelly legs after my bike ride. I have noticed that the more time that passes since my last relapse, the shorter my jelly legs sessions last. I hope the same happens for you.

- Jane
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
I like to dance, always have and yeah i think i always will be dancing in some way. The stretching is so not the same thing, that helps to get the kinks out, keeping my muscles flexible and not as tight etc but lol music is different, pleasure bound cardio work out, the music gets into my head and i can't help but move.

I'm still the dancing girl lol so i may not be moving with the same flavor but it feels the same to me, in my head that is, the body not so much. I get so into the music it still suprises me that i've started tripping, that dang left leg just doesn't get the need to move to the beat. It just gets heavier and heavier, i compensate and compensate but it doesn't really matter how much i wanna do it, it just aint going to move the way i want it to, or the way it use to do.

"I had no issues with muscle weakness/numbness because I was able to walk on my heels/toes and hop on one leg" yeah well as that wise owl has said "I can do anything for a minute" which is so absolutely true! I wish neuro's would be real for once, i can pass this one too but try getting me to do it over and over and low and behold it becomes imposible.

The focus shifts and centres on getting that leg to lift high enough, the thigh muscles to be strong enough, the knee to lock hard enough etc etc etc so weakness is not about the one or two times but the repetition will make it show its self. lol i can do anything, but try repeatedly and i'll @$$ plant because there just isn't any strength left in my leg(s) to keep me on my feet. Heck i wakeboard and there is a huge difference between crashing because i've landed badly and crashing because there's no strength left, i simply fold in on my self, its really obvious.

I actually dont get these tests, it doesn't really tell them much of anything because normal people can have issues walking heel to toe. Normal people can have issues jumping on one leg, lol some can't jump with two. I got my DH and son to have a go and they both couldn't heel toe walk, and lol my mum has never been able to jump, technically she never gets off the ground lol

Keeping fit is really important, well i think it is but enjoying what your doing is half the battle, so if walking is something you like to do, and your stretching etc then go for it!

Cheers............JJ  
Helpful - 0
1831849 tn?1383228392
For me there is a relationship between heat, level of exertion and leg misbehavior. The hotter or more humid it is and the harder I work, the more likely my right leg is to develop a mind of its own. Walking outside on a warm sunny day, after about 45 minutes my leg can start to act up. Inside on my treadmill it's rarely a problem.

I saw my neuro yesterday and asked if over doing it outside would have any cumulative, negative effect. He said no. If I over did it it would just take me longer than normal to recover.I just bought a cooling collar to help stave off the free thinking of my right leg :-)

Kyle
Helpful - 0
1896537 tn?1381900009
Annoying, isn't it?! This wasn't especially strenuous, just stretching work really. I guess I'll stick to walking!
Helpful - 0
2112931 tn?1335098402
I do the same thing. I have an elliptical that I just got a couple of months ago and my legs get really shaky when I turn up the tension or go too fast. Last night my right leg felt weak.
Helpful - 0
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