Do 'stiff' legs = 'spastic' legs?

[Kimba22]

Hi Jan,

Unfortunately, if the knee is going to buckle, a knee brace won't prevent it. I once saw an orthopedic physical therapist who thought a knee brace might help, but it didn't. I had a regular AFO that helped with my foot drop, but not my knees. It wasn't until I met that neuro PT, who had 30 years experience treating patients with neurological problems, that someone knew exactly what the solution was for me. She called in an orthotist for an evaluation, who then fitted me with the correct type of AFO.

It made absolutely no sense to me that this particular type of ankle foot orthotic could stabilize my knees! I've gone back to the same orthotist a few more times for adjustments, and I asked him why they helped my knees. That's when he told me that stabilizing the foot and ankle had a role in stabilizing the knee.

But what might help you before you even need a special AFO is Physical Therapy. Strengthening certain muscle groups may be all you need at this point. So, I recommend you ask for prescription for that first. If PT doesn't help, then see an orthotist. We're all at different levels for how much we can strengthen our muscles. (Just remember each one of those exercises really does have a purpose!)

It's amazing all the things I've learned along the way from different medical professionals. Each one has a different role in helping us with their expertise.

Good luck!

[gazdajl]

Kimba...thanks for the detailed explanation...it is very helpful to know, before I go to see this new Neuro doc. I have such a long list of symptoms...I am going to work on summarizing them, as best I can, beforehand.

I am pretty early, at least with regard to the weak legs, so I hope PT will help me to save what muscle I still have. It's strange...I have been happy , because I have been losing weight (I have cut out sugar) but I also notice that my legs, especially my quad muscles, look so skinny now...it almost is alarming (I used to have some pretty decent legs, with nice muscle definition!).

I recently purchased a body fat monitor, to keep track of body fat %, but also to deduce whether or not I am losing muscle.

Anyway...thanks again, Kimba. I can't wait to see this new Neuro doc. Take care...Jan.

[DogMa]

Thanks for the suggestions of seeing an orthotist, a 'smarter' AFO, and PT, also. I have done a round of PT but that was a year ago. Maybe it's time I try it again. And it almost makes sense that foot/ankle weakness is translated to the knee.

Now that I think about it, the knee instability and the fluctuating symptoms in my leg have all increased along with an increase in foot drop. Kimba22, I am so glad you pointed out the connection. I just never made the connection!

(Yes, gazdajl, I love dogs and have a houseful of sighthounds at present.)

[J-Bo]

me too

I have the same problem with the tightness and the weak knees when I push myself too hard. When I told my MS doc, he said that it couldn't be spasticity because my muscles weren't over-developed.

That wasn't the only thing he said that seemed uninformed to me, but that was my first time seeing him, so I'm hesitant to dismiss him so soon. But it doesn't inspire my confidence in his knowledge.

[Kimba22]

Hi Gazdajl & Dogma,

You're both very welcome. Stabilizing my foot and ankle in a hinged AFO helped me because there was only so much I could do to strengthen my other muscles. I hope physical therapy will help you both strengthen your muscles enough that you won't need a special type of AFO. (Mine are bulkier and I'm very limited to which shoes I can wear now.) Even though I've done my rehab exercises for years (with ever increasing difficulty), I didn't entirely understand the relevance of different ones until they became harder & harder, if not impossible, for me to do. Each time that has happened, it then translated into another new problem.

Gazdajl, it's very important to strengthen those quads (and hamstrings) as much as you can to help your knees. I hope your appt. goes well with your new doc, too!

I have the same problem with the tightness and the weak knees when I push myself too hard. When I told my MS doc, he said that it couldn't be spasticity because my muscles weren't over-developed.

Hi J-Bo,

Spasticity doesn't have anything to do with how developed one's muscles are! I don't know why a neurologist would even say that to you? Over-fatiguing your muscles can bring on sudden weakness and probably brings on your spasticity, too. (Movement can aggravate mine, but so can lack of movement) Here's a link about spasticity (what it is and what is used to treat it) from the National MS Society for everyone: http://www.nationalmssociety.org/abo...ity/index.aspx Physical therapy would be a good idea for you, too, to preserve and, hopefully, build up your strength. It's never too early to learn a rehab program.

If other things he/ she says make your confidence in him/ her waver, I think it's time to seek out a new one. Good luck!

[J-Bo]

Hi Kimba. Thanks for your kind response. I am going to PT, actually for the 3rd round. It hasn't been helpful before, in fact it's been counterproductive as I didn't have an MS Dx and they would make me do things that made me feel worse.

But at least this time I'm doing it on my own terms. That means I come in once every 3 weeks, and she gives me exercises that I can do at home. The times before when I did it they would have me come in 2x a week, and tell me to do all the stuff I was already doing at home. Why? ($$$)

I'm sure this isn't anything you don't already know, but just getting to and from the PT place uses up precious energy that I already can't afford. I'm just barely clinging to a normal life as it is. They have to prove to me that it's helpful to justify taking a big chunk of my ever-shrinking life.

As for the neuro, I'm very doubtful. He's supposed to be an MS specialist, but he also told me that my neuropathic pain was very atypical of MS and that if Gabapentin didn't help, there's nothing else they could do. Pretty much everyone knows that none of that is true.

Sorry for the core dump...I had to go to PT this morning before work with all the snow we had, so I was out of the house for 12+ hours and really feeling it. Thanks for listening, anyone who is still reading.

[gazdajl]

Kimba...thanks so much for the valuable info! As one who is in limbo, I have had a hard time getting my Neuro doc to believe that my symptoms need any 'help'.

But now, with my new Neuro appt coming up, I am going to specifically ask for PT! I am much worse now, over the last several months, legs-wise, at least, to just keep quiet anymore.

I am actually, usually a pretty good 'self-advocate', but with this autoimmune arena, I have been more hesitant to push, because I try not to be the type who 'tells the doc how to do his job'...but...it is time for me to speak up!

Thanks again, Kimba...much, much appreciated. As for my leg muscles, that is why I continue to take my dog for a walk each day, challenging as it is. But, according to you, I need to also do specific exercises, for my quads and hammies. And...I will do so, I promise...I will report back, after my appt on the 18th!

And J-Bo...please hang in there! I feel for you, and please keep us posted! You are cared about greatly, here!! Love and Light, all. Jan.

[Kimba22]

Hi J-Bo,

Sorry to hear you had such a long day. I hope you are recovering from it now. I can relate to what you are saying about PT. There have been many days it has taken every sheer ounce of energy out of me to go. But, in the end, I usually have some improvement from where I started. That makes it worthwhile for me, as exhausting as it is. Going to PT also helps keep patients from slacking on their exercise program (it happens to the best of us), so I suppose that is the point of going to PT even after you are familiar with the exercises. Rehab for MS is so unlike folks recovering from orthopedic injuries.

It isn't "atypical" to have neuropathic pain in MS. And not all neuropathic pain responds sufficiently to a medication like Gabapentin (although, sometimes it eventually will once the dose is high enough). But there are other medications that sometimes offer relief, depending on the source of pain. But, unfortunately, there is no guarantee any of them will help.

Not too long ago, pain wasn't even considered a symptom of MS, so there are still a few older medical professionals who don't understand it exists. I didn't have a clue I even had MS, when pain finally put me on my path to a MS dx. (I saw my fair share of neuros who told me I was just depressed.) Uncontrolled spasticity was just one of the causes of my pain, and I finally got some relief after I had a baclofen pump implanted. Here is a link for you about pain (along with ways it can be treated) from the National MS Society:
http://www.nationalmssociety.org/abo...ain/index.aspx

Good luck with your neuro, unfortunately, it sometimes takes awhile to find a good one.

Gazdajl,

Best wishes with your new neuro ... hope to hear back your appt. went well and you liked him/ her! Good luck with PT, too! You'll learn quite a few exercises there that will help you.

Take care,

[J-Bo]

Thanks again, Kimba. Yes, my "MS specialist" seems very uninformed about MS.

Other neuros have prescribed me Cymbalta, Lyrica, Topimax, Tegretol, Elavil, Carbamazepine, Effexor, and so on. Unfortunately, none of them helped, but they do for some people, and for him to say that Gabapentin is the only drug is frighteningly out of the loop. All he'd have to do is look at the MS Society's website to see this as well as the info about MS and pain, fer crying out loud.

As for the PT, I know from experience that other times I've tried, what they were doing made me worse. I appreciate what you're saying, but this time I need proof by trying it my way first. Only if there's quantifiable proof will I consider making it more frequent. At the rate at which I'm declining, I don't know how much longer I have at this level of mobility, so I feel I have to protect what little I have left.

And gazdajl, thanks for your kind words. I wish you the best too!

[jon_draffan]

CBD

I urge all of you to research CBD (cannabidiol).This something that will be getting more and more attention in the next short while. In the last few months it has gone from obscurity to being sold on Amazon.

I will not proselytize about it, though it is something that works well for me in my treatment of leg stiffness/spasticity.

-Jon

[bobus498]

Jon,

I'll "proselytize" for you. I tried oral Baclofen and it didn't work very well. I live in a state where medical marijuana is legal so I decided to try that. Works better and much faster than the Baclofen. AND it won't kill me if I suddenly discontinue using it.

Not a fix but definitely effective for me in alleviating the painful symptoms.

My VA neurologist knows about this and has voiced no objections.

[bbelaine]

I've had stiff legs too-it started with the left for three weeks, then the right started. Now it's the calf on the left-feels like I've been working out and overdoing it. I also get sore arms, the biceps and forearms right now. Both my primary and neuro think it's the MS. Really uncomfortable-with the legs, I limp a bit and the arms just stop me from doing things like lifting anything more than a few pounds or moving in a particular way-putting on my seat belt is a production! I've been started on Gabapentin but it doesn't seem to be doing much so far-the dose might be upped soon. If I'm sitting still, it's not bad, but moving is something I think about before I start. I have to say, moving a little does seem to make things a little easier as long as I don't over do things. Not much help to you here but good luck. Oh, I forgot holding a hot water bottle on the sore bits does make them feel better.

[jjs]

Thanks for the thread

I just wanted to chime in and say thanks for the thread - I was wondering the same thing. I am not officially diagnosed (waiting for more definite spots on the MRI) but my neuro and the MS specialist on her team are sure I have MS. I go back to see them again this summer for repeat MRIs to see if the spots are more definite.

From the start of my MS journey (3 years or so) I've had stronger issues with the right side of my body. And then last year it was really bad. I assumed the main problem was spasticity but I was not sure. The muscles near my shin and also the muscles in my right forearm are weak but also tight and stiff ... having them weak AND tight is a really strange feeling. This causes my foot and hand to be weak and not work properly. My foot drags or does not step correctly and my hand does not grip good. Sometimes, as said in other posts, my right knee all the sudden gives out.

Using a cane helps get around when the issues are really bad. Sometimes I just don't go anywhere at all.

[ms382012]

Spacticicty

Hi, all...I am having real issues with stiff legs. We are doing a lot of walking right now, looking for furniture (to put in our new NM winter home). Last night was a long one, however, with a lot of stiffness and aching.

Yesterday was a first for me...the guy helping us in a 3-level furniture store, saw me sitting in a chair, and asked if I wanted a wheelchair (I use a cane whenever going out). So far, if I sit for a few minutes, I can continue on, for a bit longer.

Today, however, I am paying for it, big-time...my legs feel so stiff and achy. Is that the beginning of spasticity? I also notice that I stumble a lot lately...mainly my left foot, where I have all the numbness and tingling (all along L side). I haven't yet had any spasms, I don't think (except for cramping toes). Thanks for all of your insights and advice, in advance. Love and Light...Jan.

My muscles cramp all over and my tendons are perpetually tight, but I have had one significant week of spasticity. I could not bend my legs. At all. Could not negotiate stairs. It lasted at least 3 days. My doctor told me I probably had a bad dream and cramped my muscles! This was totally unrelated to any "spasms" I've had. And had nothing to do with activity, trust me, I just had a normal day and woke up with the spasticity.