Quadriceps Weakness

[Citlalli]

Anyone dealing or dealt with this? I'm one month into a relapse after 5 year reprieve, and this is always my worst symptom. Can barely put one foot in front of the other. Any suggestions (besides bed rest, air conditioning, etc.) much appreciated. I need to keep walking! Thanks...

[celeste]

I have not logged onto this board in over 2 years but decided to come back to see if anyone else is having this problem. Well, apparently we are the only 2 who are!

Last week I saw the new MS specialist nurse/practitioner at my neuro's office. She gave me a script for an eval. at an orthotics place to be fitted for a K.A.F.O. I assume the K stands for knee. I already have an AFO but it's not doing the job. My leg is bent out of shape because of the weakness in my quads & it's putting a lot of pressure on my knee.

I haven't made an appointment yet - partly because I've been too bummed out about it. I have absolutely no idea how one would get pants on or off with one unless they are clown or parachute pants as it goes up to mid-thigh.

Let me know if you are still on these boards & I'll let you know what happens after i go to investigate this next horrible MS situation.

[Citlalli]

Hi, Celeste, yes, I'm still here, but much H2O under the bridge later... I see you're looking at KAFO's, a thought that certainly crossed my mind. My relapse morphed or flourished in so many ways that the quadriceps issue seems to have somewhat resolved. It's hard to say, because I find it impossible to tease out what is weakness and what's spasticity these days. I can walk for a couple of blocks and then I basically can't, so it's more total lack of stamina than weakness I would locate in one set of muscles. I have foot drop but it comes and goes, and the worst problem is really muscle cramps and spasms.

So.... not exactly your comrade in arms (or in thighs), though I'm with you that this is a nasty, disconcerting problem. The challenge for me is how to do things in public places. I'm okay sitting, but not standing or even going very far once I've entered a place/space (like movies, or even a restaurant). I'm still puzzling this out and worried about how I'll manage in the snow. What about you?
I asked the snow question too, on an earlier thread, and it seems most people just stay home. I can't--I have to work!

[Citlalli]

I meant to add in the post I just sent that I'm doing a lot of physical therapy and daily stretching to try to stay ahead of things. Please don't give up!

[celeste]

Hi, Citlalli,
Snow & ice freak me out, too. For some odd reason winter hasn't really started yet in our area. Last year we had almost 100 inches by this time. This year about 5 inches & it all melted very quickly.

I can't work anymore due to PPMS but when I did, I was lucky enough to work with very accommodating people so I could park right next to the door to the building on snowy days, leave my car keys on my desk & someone would move it to a real space later in the morning.

I don't go too many places in the snow anymore but usually there's someone available to help. For example, when I get to the hairdresser I call & someone comes out to walk me in while someone else moves my car. By the end of the winter I was giving my car keys to lots of people who always seemed happy to help. It was pretty weird but worked. Usually, the sidewalks near places are OK - it's crossing the parking lots that freak me out.

We'll be spending 1 month in Florida so I'll only have to deal with 2 more months of it when we get back. Hopefully, Feb. & March will be as easy as Nov. & Dec. were.

I won't be able to get fitted for a KAFO until Feb. I hope I don't lose too much more muscle by then as I won't have my usual gym/pool to work out in 2-3 times each week while I'm away.

It sounds like you can walk farther than I can at one time. I hope your recovery goes well. I HATE asking for help so often but try to get over it to keep yourself safe.

[smashms]

I too am being fitted for a KAFOs on Jan 23 for both legs since September I have lost all use of my legs from my waist down. Hoping these will at least let me able to at least stand. My therapists say I will most likely never walk again but if I can get these and be able to put some weight thru my legs again it will be a bonus

[mgoerke]

I'm so glad I saw this. I started to have a feeling in my quads that was like the burn you get when you run upstairs (although I can't remember the last time I did that). It happened out of the blue one day when I was walking in target. I didnt bring my cane and didn't grab a cart since I was just going to one specific aisle.

The burning and weakness got so bad I had to sit down. It's been happening more and more frequently over the last six weeks. Now it is constant. I keep going on elliptical because I thought I was getting out of shape. I have been telling myself that it wasn't ms.

Oh well!

[Citlalli]

I may turn this into a new thread, but the question underlying all of this is how to keep on walking (or standing) if legs are giving out.
For those getting KAFOs or thinking about that, how do you actually get around? Are you using scooters? Wheelchairs? I'm between a car, a walker and a hard place, the latter being what to do when I get wherever I'm going. My mind wants to keep walking but my legs say sit.

[kebsa]

i am an amputee as well as having MS and my amputated side is my stronger side but i need an above knee prosthesis that relies on a strong leg on the other side to stand and sit and even to get the prosthesis on. i had not walked for nearly a decade and then in 2007 i worked really hard with physical therapy to try to get mobile and started using one of those knee scooters just to get some exercise- it was not everyday walking as it was like running a marathon but in theory it should not have been possible after a decade

unfortunately i have had futher relapses that weaked my remaining limb more so i am now wheelchair dependant but able to do standing transfers. my comment is that i found that as i had to use the chair more and more, then catheters instead of having to transfer in the bathroom, i was at risk of losing some function simply from less use. i have poor control in my left leg until i am upright then i can lock my knee to pivot and transfer as needed but lately i am having trouble with that- i am getting over a mild relapse that did affect that whole left side but once again i am have physical therapy to maintain that abilitly to transfer. my main point is that if i used the chair and did not remember to work on the transfers, i would have lost that function ages ago just due to loss of strength, instead i make sure that i do several sit/stand/sit throughout the day just to maintain strength. it is far easier to lose muscle strength from reduced activity than it is to get it back- for me even being sick in bed for a day has a noticable effect.

so even with your KAFO's, scooters, etc make a point of using what you have left- the old use it or lose it thing is very true

[Citlalli]

Kebsa, thank you for your post. You're dealing with so much more than most of us, and the danger you raise is what is keeping me from getting a scooter. I can't walk very far, but figure I should walk the very farthest I can. Ergo, the rollator. But then I come to what feels like the end of the rope. Then what?
I guess one day I'll have my ducks lined up: nothing, cane, rollator, scooter. And go from one to the next as the day moves along!