Loosing your legs = making sense of whats happening

[supermum_ms]

Hey guys and dolls,

I dont think i'm ever going to get this straight in my head, i've actually been saying "i loose my legs" since i first collapsed in 03. I do believe it was originally more fatigue related, than muscle tone etc. 09 probably highlighted the difference more so because its when I first started walking like a human string puppet. Hmmmm that doesn't usually happen to 'normal' people lol

Mentally i'm still the athelete but physically its a constant (one i'm loosing) battle with just hanging onto what my legs can feasibly do. I'm not talking about what my legs do when i've lost my verticle but just my everyday. I understand the basics from Quix's health page but i'm still expecting from years of muscle strength knowledge (all my sports require strong legs & balance) that i can build muscle mass and strength. Well thats not true, my reality is the opposite, the more i do the less i have.  

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Muscle-Tone-And-Spasticity/show/159?cid=36

I stretch multiple times a day, i have adapted yoga to suit me and i'm determined but still i'm loosing muscle,not only strength but mass too. LOL i've lost my butt and my legs resemble chicken littles legs or rather they are chop stick shaped. Resently i've been finding it harder as the day goes on, to get lifting strength out of my thighs, my legs become really trembly as the muscles spasm in protest. I could always rely on my right leg but my right is playing up too. Seriously i am folding like a hinge just getting out of a chair, and forget about catching my self if i start to topple, which i understand from the health page is lack of fast acting responses.

All this stretching use to help but by the time i'm off to bed at night, i'm half folded up and still trying to get my legs to lift. I've even caught my self thrusting my pelvis forward, steps are less lift more sideways slide type of thing, which i'm not sure is a good thing to be doing though i have to admit i'm not such a sting puppet, more lurch so i'm just missing the bolts coming out of my neck lol

DH is once again insisting i need to up my protein etc because thats what the guys at his gym use to build muscle. He's also of the mind set that because i'm constantly moving, in tremor or muscle spasms that im constantly burning my muscle energy, i'm not sure he's wrong there. But what to do about it is the problem, at this rate i'm not going to get back on my wakeboard and seriously i'm not giving that up with out a bloody hard fight. So what do YOU do to keep your little legs strong enough to take your weight?

Cheers...........JJ

PS i'm open to any ideas, seriously anything!!    

[COBOB]

I'm not so sure about "the nerves not communicating with the muscles."  The CNS is not sending and receiving the correct signals with the peripheral nervous system.  The muscle, neuromuscular junctions and peripheral nerves are probably fine (EMG/NCS testing being normal in most MS patients confirms this)  and  in theory, you should be able to build muscle the same way spinal cord injury patients do:  neuromuscular electrical stimulation (NMES).  Take the CNS out of the equation and directly stimulate the muscles.  

I would ask a PT before heading down this road, but it does get around the CNS damage that MS causes and would allow you to build muscle, even if you can not control it.

Bob

[jensequitur]

Hey, I had a revelation this morning - Quixotic1 has functional foot drop, because of spasticity.  You mentioned your pelvis pushing forward.  I think you're having two problems - leg weakness and pelvic spasticity.  I have frequent problems with the muscles of my hip flexors being spastic, but so far it only hurts and reduces flexibility.

What I would do right now is look for activities that don't require your legs.  The toboggan (the inner tube thingie with the handles) sounds like just the thing.  As long as you're not having problems with your arms!  Mine get so tired.

Another thing to remember - while recovering from a relapse, you won't have as many resources to recover from fatigue.  But in remission, you'll have more regenerative capability.  Try to take frequent breaks and rest up, and you might get a little more time out on the water.  Just don't push yourself, because once you push too much, then there's nothing left.

[supermum_ms]

Thanks everyone for the encouragement!!

What i find is happening is my legs are becoming more and more unpredictable, from the start of the day to the end they just keep loosing their strength and reliability. I am constantly thoughout the day doing stretching exercises to keep them supple, my calf muscles get tighter and tighter so I really need to keep stretching. That same tight feeling is now happening in the top thigh muscles but inner thighs are fine though floppy, and i have not stopped doing the same exercise routine for over 2 years, appart from breaking it up into smaller and smaller blocks.lol

My window is getting smaller, I use to only have my left leg trembling in protest when i exercised but now my right is doing it too. The left has clonus and it looks like my right is starting to go that way as well, i really am not sure how this part works but the more I am using my legs the more bouncy i get, which of its self is nutty but when i add the balance issues into the mix and folding like a hinge, it can get a bit precarious.

Since my 'big bang' of 09, when ever i do wakeboard and let me tell you it is a challenge even though i can only really do a few minutes before all my strength is completely gone and I really do mean gone. Gone so far as i am unable to move at all, fully supported by my vest holding me up in the water and once they get me into the boat, my body reacts with big chunky rolling spasms and jerks. My tremor is full on, i'm rumbling hard and that part isn't pleasant but i've accepted its pay back, unfortunately it can last for hours before it starts to settle so i'm pretty useless and i hate that. lol

I've always been able to feel my strength go, i can feel i'm getting weaker, then whooosh i've got nothing and i start to fold, lol i cant try to push through it cause there's nothing left to hold me up, for safely i let go and lean back so i hit the water as softly as possible. I'm not in the same physical state i was 6 months ago, i've had 2 hard hitting relapses since then and my balance, muscle strength and sensory input is really shoddy now lol and its winter here so whats it going to be like when i'm dealing with the blasted heat too?

Loggically i know this is probably a fools errand, but still I NEED to do it or at least try everything available that can help me get it done. Looks like i'll be giving up my board and going for a begginers, they have less glide and movability and more stability, lol i'm not going to be doing tricks so it might help like my gripper gloves help with part of the problems, inch by inch i'll get there!

Cheers..........JJ

[maestro1959]

Hi JJ.

I understand what you are saying.  My legs have gone very quickly.  I was diagnosed with PPMS last July. I think those of us who were athletic, and relied on our legs for our sports keep holding on to the notion the our muscles will compensate somehow.  For me it was long-distance cycling.  My balance had detiorated for a time, making that impossible.  It since has improved to the point that I could probably keep a bike upright, but my leg weakness prevents riding.

I ride a stationary bike at home and at PT, but the going is slow.  I have noticed that in spite of the work my muscles continue to atrophy.  I started with foot drop on the left, but is now bilateral.  The calf muscles are sad to see, and I am now noticing the quads and hamstrings are getting floppy, too.

November 2010 I bought a wheelchair off Craig's list because I did not have health insurance for a bit.  I have insurance now, and was fitted for my own chair just last week.  It is something I will use in and out of the house.  I try to use a cane as much as possible at home, but those times are fading quickly.

I am right there with you.  Hang in there.  We all know the importance of a positive attitude.  Take care.

Beth

[grannyhotwheels]

Hey JJ, I absolutely love your attitude... I have days where I'll set around saying, "Oh, woes me" but it makes me mad when I do that... I make myself get up and walk every day weather I feel like it or not... It may not be very far but every day I'm up...

Sitting in my power chair day in and day out can really take it toll on you and I just can't make myself resort to it 24/7... When I do walk I take a lot of falls, and I bounce off the walls...lol  It's probably quite amusing for someone to be watching me getting my walk in...

I think the hardest thing for me to give up was playing softball... I loved the game and played constantly... Had MS not taken that away I'd still be out there playing... We never know what life is gonna hand us but when it gives it to us we need to make the best out of it...

I'll be praying,
Carol

[essdipity]

Well, JJ, I may have missed something along the way, but have you been to a physical therapist who specializes in neurology-based issues? These are hard to find, even in my big medical-specialty neck of the wood, but it might be well worth it.

I've been going to a gym pretty regularly, with one goal of strengthening the muscles that do work well, hoping that they'll compensate for the ones not getting sufficient nerve signal. My right side tends to be weaker, and I'd notice that in some activities the left side was doing more of its fair share, but now things seem a bit better, so some unaffected right nerves and muscles must be kicking in.

Muscles atrophy from lack of use, and we can't force ourselves if the nerve doesn't cooperate.
I guess a PT could work them for us, but how realistic is this over the long haul. Wish I had a better answer.

ess