Question re UMN issues

[notme]

HI

I am trying to determine if the issues in my back and legs are from whatever is going on or something totally different.

The Neuro wrote an RX for zanaflex for spasms yesterday (thanks--it knocked me out for about 16 hours) and I woke with agony in my legs. Slept wrong, I guess.

My problem is with pain from the spasms--that the zanaflex isn't helping yet--nor is valium--but the real issue that is causing the most problem is the pain near my feet/ankles.

Any of you remember shin splint type of pain as a teen? Where each step feels like something must be broken? The pain in my ankles really feels like something is broken--obviously, i don't believe it is broken--but the pain is bad enough that I absolutely can not put weight on it. i've been using my rolling walker and resting my knee on it to get around the house today.

Is this something similar to any of you with PLS or something I perhaps should see my GP about? I am going to call him tomorrow and see if he wants me to try the zanaflex longer or move on to the baclofen.

Can ankles spasm like this? Should they hurt this bad?

Thanks

 

[AKmom]

I have pain in my feet/ankles and actually every joint and muscle. Mine is not arthritis but is actually the connective tissue, tendons and ligaments that are stressed and painful. Maybe due to weakness? They hurt 24/7. Now whether or not this is part of PLS, I am not the one to answer that. However, I was taking tizanidine (zanaflex) for spasticity and found it to make me sleepy also. So at my suggestion, my doc gave me baclofen. Baclofen works better for me on the spasm part. It also lowers the amount of spasticity, although it is ever present to some extent. It made me somewhat groggy at first but I cut the dosage back and started slow. I am now on 40 to 60 mg a day. I take zanaflex at night with the baclofen for sleep. This seems to work for me but does not remove the pain completely. Just brings it down to a tollerable level for me.

I had a muscle biopsy and will know the results on Friday. We shall see if there is a reason found for my pain other than PLS. I think talking to your doc would be the right thing to do. It could be a number of things. Especially if you are diabetic.

 

[Tokahfang]

I don't remember any shin splint type pain. Eventually I did break down the tendons in my feet and was on crutches from that day forward. (I had been able to get by with a cane or two up till that point.) The tendon breakdown didn't hurt very much, but it did cause a very prounced limp that caused my friend doing his residency to drag me to the hospital. At the time he was furious that I'd done so much tendon damage to myself, but looking back I hadn't been able to push the front of my foot down in six years. That's a very imbalanced and one-way pull on the tendon, couldn't have been good for it.

Give Zanaflex 3 or 4 days. The first day I took it, I collapsed in the middle of a transfer (it made me so weak) and fell asleep in 5 minutes. The second day was better, but the fourth it helped me sleep a little but was otherwise great. It helped reduce my night time spasm pain a great deal.

 

[notme]

Thanks--

My shin splint comparison was from when I was a teen--would hurt too bad to walk, but of course, nothing was broken.

I've sprained my ankles tons of times--especially the left. I've fallen up the stairs too many times to count--but for years. I was told as a teen that I'd never break that ankle most likely because the ligaments and tendons had so much 'give'. I broke my OTHER ankle a few years ago--and it felt like my left does now--but of course, when I broke the right, it was very swollen.

My left ankle pain is directly on the outer edge. Doesn't hurt at ALL until I try to put weight on it.

The neuro had suggested baclofen, too--but wanted me to try this first. My legs were in severe spasm when I was there, which made his exam difficult. I don't know if that's why he felt it was so important to do the EMG/NCV as soon as possible--and in a way, I'm hoping that's a good thing--as I don't know that there would be any 'urgency' if it's ALS. He wouldn't even wait til next week when my new plan kicks in--said it had to be this week if at all possible. He says I need a muscle biopsy, too--which I'm afraid to do. The thing he asked that scared me the most was whether I had help at home for care giving. I asked him WHY he'd ask me that and he said "We just like to know that people have the proper care." Is that ever a non-answer or what? But, in all, I did like him.

I'll ask Friday for the baclofen. I was thinking the ankle pain might just be from the muscle spasms. But it's no doubt PAIN--and pain shouldn't be happening if I have ALS (I keep holding on to that) These spasms are getting really bad, and even causing my hand to cramp in positions I have to literally move apart with my OTHER hand. It's like it just locks in that spasm position with fingers bent in painful positions.

Thanks Beky and Joyce. So--we're 50/50 on pain. One with one without. These conditions are very strange symptom-wise. I'm sure my gait isn't helping anything--as I always limp--but I have peripheral neuropathy issues from the diabetes, I think--and my feet always hurt--the diabetic ulcer on my heel never healed properly and still hurts when I walk, even 8 years later.

Joyce--I hope your biopsy tells them something positive.

It's hard when you don't know who to go to for answers. I'm the type that needs to TALK about how I feel--and I just can't talk to my daughter. I want her to not worry more than she already is.

Thanks for replying.

 

[Bad Balance]

Should't this post be moved to the "do I have ALS?" area?

 

[notme]

Sorry---it was a question specifically about spasticity--which I know I have, and the neuro is treating it. But, I didn't know if the ankle issue was a "UMN" issue or something different. Didn't seem like a "Do I have ALS" question. Sometimes I don't know what to ask the neuro about and what to just deal with a GP about.

I thought a question with this kind of issue and the meds used would be better over here where the people are dealing with mostly UMN issues.

Al--if this needs moved, I fully understand. I ddn't think it fit over there because it wasn't a question regarding ALS at all--but a specific aspect the spasms/spacticity I'm trying to sort out symptoms to. If it's not related to spacticity--then I know I need to see an ortho or my GP to see if there is a possibility of a stress fracture from one of my many triping episodes from that leg.

Again--sorry if this is improperly placed and thus annoying to anyone

 

[Tokahfang]

Notme came to the right place for a UMN discussion. I'd appreciate it if her post stayed here. If you have a question about UMN symptoms in particular, we're a great bunch to bat them around.

This forum is also minor enough we have a little more freedom to speak of the nuts and bolts, and worry less about freaking out someone with health anxiety who randomly read a post out of context.

 

[notme]

Thanks, Beky

I seem to be upsetting a lot of folks by asking questions I do tend to be 'chatty'. I'm hoping that perhaps they will find something like PLS rather than ALS--and find that my hand atrophy is caused by something in my neck the neurosurgeon missed.

The atrophy stuff is worrisome--but I'm adapting to not being able to do things--but other UMN type stuff is causing me a lot of problems. Valium stopped working ages ago and Zanaflex is knocking me out--although from past experience with it, I know I'd adjust.

I read that Baclofen has no issues with needing a higher dosage over time (like you tend to need with daily Valium or Zanaflex) Do you happen to know by personal experience if that's true? I've had blood clots and a stroke--warning about that apparently, but can't find out what those are. I wonder if perhaps that's why the doc wanted me to try the Zanaflex first.

I have no personal experience with Baclofen at all--but it's supposed to work really well. I need to stop the spasticity somehow.

 

[AKmom]

for me baclofen has only lessoned the spasms and spaticity some. If you are trying for absolutely not spasticity you will most likely be left with weakness. Then where would you be? I have gotten some use to being tight all the time. But when it causes me to lock in to painful spasms, I am sure to need a baclofen and it helps withing 20 minutes. I find if I sit or lay to long I get locked into spaticity. If I walk or am up too much I can get more spastic but I also get really weak and fatigued and need to sit. Then when I sit I start the spasms that you described with your hands...only I get them anywhere on my body now.

As for atrophy, I have some atrophy that was first pointed out to me by a hand orthopedic doc after I had ripped out all my ligaments in my thumb from trying to open a jar. That was last October. Since then I have found antrophy in several spots on my hands and shoulders that my doc has seen and agrees with. So it means that there are muscles that are not being used for whatever reason, even though I use my hands alot as I am a photographer and artist by trade. I have been told that I do not have ALS.

 

[IhavePLS]

I seem to be upsetting a lot of folks by asking questions I do tend to be 'chatty'. I'm hoping that perhaps they will find something like PLS rather than ALS--and find that my hand atrophy is caused by something in my neck the neurosurgeon missed.

Notme,

While I am sorry that you are having these problems, I greatly appreciate your posts, as they help to validate my own symptoms -- i.e., symptoms that often do not make sense to me. Thank you.

I wanted to mention to you that Zanaflex (tizanidine) can cause horrific nightmares (I should probably call the "night terrors instead, as such dreams go well beyond nightmares. I won't go into the specifics of my own (very bizarre), but I began to have serious night terrors after I started taking Zanaflex (6 mg at bedtime)....these episodes stopped immediately after I quit taking the drug. I did look this up - and this is a rather common side effect of Zanaflex. Thought I'd mention - just in case.

Mike

 

[IhavePLS]

I did look this up - and this is a rather common side effect of Zanaflex. Thought I'd mention - just in case.

Mike[/QUOTE]

All, I meant to say that such sx. are a rather uncommon side of effect of Zanaflex. Sorry for the error.

In any event, yours truly (who gets most every side effect there is from any drug I take) did have this uncommon symptom. Resolved after discontinuation (thank goodness for that). :lol:

 

[olly]

hello all,can i but it.
patty i have had ankle spasms and pain on/off for most of the 10-11yrs with this.
i can tell between spasms in the ankle(feels like its being rung out) and ankle pain which i feel is caused in part by gait problems and makes it feel like i have a bad sprain.
keep a watch on your gait and how you place your feet.

as for meds i am a 100% advocate for baclofen,once it builds up in your system it is very effective and not addictive or needing to increase dosage as with other meds.
i would have been in a powerchair years ago if i were not put on baclofen.
i noticed you are on a hell of a lot of pain drugs,sometimes taking too many types can be counterproductive.
if i were you i would come off some of the others and start on baclofen.
if spasms are too bad and your not getting enough relief on a oral dose than you are a candidate for a pump.

like joyce,if i sit for half an hour i am stiff as a board,if i stand or walk for the same time i am stiff as a board...............in time you learn how to control things yourself,do a little and rest a little.

its possible patty that you may have umn dominant als..........thinking this by your spasticity but what you describe as significant atrophy.
i have mild atrophy like some others but i have had pls about 11yrs now.
i believe you are early in your desease process to develop atrophy in pls.

 

[notme]

Hmm....sounds like I should get the baclofen he offered.

The atrophy I have is ONLY in my hands--left--my dominant hand--the worst. I have a lot of trouble using my hands. But--that hand also cramps and gets itself in all kinds of weird positions when it charley horses.

Guess I'll find out something tomorrow with the tests. Still not sure when he wanted to do the muscle biopsy--or even why. And, the only twitches I've noticed very frequently is in the hands. Other twitches I'd call normal for me.

Thanks for the replies. I'll see if he can tell me what's up with my ankle tomorrow--or send me wherever if it's not due to spascity.

 

[olly]

i really hope you will be a step closer to some answers tomorrow and will be thinking of you.
thanks for pm...........i do have plenty of empathy and get rather emotional but i think in part thats down to bulbar (can't remember the word for it)

 

[olly]

emotional liability.