My stupid leg! (spasticity)

[wendya432]

So my right leg (the worse one) has been driving me crazy. We went on vacation last week and I did a lot of walking. In town, in the sand, and went swimming in the lake. I was really hoping that the extra exercise would help some, but instead I feel even worse.

My spasticity is worse, even after a few days back home and resting. It is so incredibly tight and stiff and sore. And both legs are even weaker. Along with more weakness in my arms and more fatigue.

It is just so frustrating seeing more progression. Knowing that it is just getting worse. And with me, once I progress, it doesn't ever get better. Also I've developed a positive babinski reflex in my left foot now when it used to just be my right.

The only thing I have for it is a muscle relaxer (robaxin) that doesn't really do anything for it. I'm on tegretol and effexor, and both are supposed to help with pain, but neither seem to deal with this kind of pain from the spasticity.

I hate bugging my neuro and always asking for new meds. (just asked him a couple weeks ago to try tegretol for my trigeminal neuralgia/ cluster headaches since the other meds we've tried didn't work). But at the same time it sucks having to live with this darn stiff leg!!

Also, I'm not diagnosed yet, basically I'm at the point that we know there is something wrong and either it is PPMS and we can't see the lesions on the MRI yet, or it's some type of upper motor neuron disease that isn't ALS. And right now we are kind of at a stand still. I'm progressing but we don't know what exactly is wrong. It's just so frustrating!

[22cyclist]

If your legs are how they say they are, you need to make an appointment with your neurologist. He needs to check for babinski reflex (its hard to check on yourself-the element of surprise is gone and you may help the reflex). Anyway, at this appointment you can broach the subject of baclofen. Is your doc an MS specialist? If not, you may want to get a second opinion. Have you had an LP? If so what were the results?

Good luck.

Lisa
Moderation Team

[abeautifullife]

Just a general observation: if anyone, MS or no, overdoes it with a muscle for a few days and then just stops/rests to repair it, they will get stiff. I made this mistake for a year before I was dxed. I would have problems with stiffness or weakness in my right leg, so I would completely cease unnecessary activity and it would just get worse when I tried to resume. My problem was partially MS and partially a back injury. As soon as I started sticking to moderate activity daily and a gradual increase in activity when I wanted to ramp up for something more challenging (I'm working on a 5K now), I stopped having those problems.

I'm not trying to discount your symptoms at all, and I don't know that things will get better, but I do know that overwork and then complete rest will lead to problems regardless.

[wendya432]

My mom has checked my babisnki, she is a nurse and got her masters in neuro-science nursing. But she is still baffled at what is wrong with me, although she can check my reflexes.

No my neuro isn't an MS specialist. He is just at the general neurology clinic at UofM and I think his specialty is in migraines. I will call and see if I can get into one of the neuros at their MS clinic. Maybe if I see them they can get me on baclofen.

My LP was done but they messed up my blood sample and weren't able to do the o-band testing, although the rest of the results were normal. (still waiting to see if they want to redo it or not)

Thanks for the reply!

[Fed Up]

Wendy, are you seeing a primary M.D. to help you navigate the specialists and keeping track of your symptoms?

Unfortunately, not all M.D.'s are scientific genius's. Particularly, if their specialty is not within your issues.

I seldom get a relief from stiffness, regardless of activity or inactivity. My physical medicine doc sends me to Physical Therapy. It is 28 miles away, so I do as much as I possibly can, at home and use the extra time saved from driving, doing things I need to do.

regarding your LP; I had a similar experience and wonder wtf in regards to yours. My spinal fluid sample hemolyzed and they were only able to count O bands. For some odd reason, they did not feel a need to redo it. That seems to clearly be information that has been omitted that needs to be a serious consideration in getting a diagnosis for you.

fed up

[rdmc]

Give the neuro a call...see if they can check you for spasticity...and then if that's what's causing the problem, he/she will prescribe an anti-spasticity med (Baclofen or Zanaflex.) They do work well on spasticity, you just have to be aware that they can cause drowsiness, so until you know how you react to them, as the meds info say "do not attempt to operate heavy machinery."

[jjs]

No my neuro isn't an MS specialist. He is just at the general neurology clinic at UofM and I think his specialty is in migraines.

U of what M? I go the the University of Missouri, Columbia ... so my "M" is Missouri. If you are in the same "M" I suggest you go there if you are near it. I have had nothing but a great experience with their neurology team. My neurologist is not an MS specialist but she works very closely with one that is and he goes over my charts with her and adds his .02 cents. I appreciate them both a lot.

On a side note, I tested positive on the babinski but it was not very dramatic of a response. My feet hardly did anything except the big toes on both feet went up a little. I had no idea what she was doing and thought it quite strange. I would be curious to see what happened if she did it again.

[wendya432]

M is for Michigan in this case.

I had left a message with my neuro and he said to make an appointment. They got me in for this coming tuesday. Hopefully he will get me on some baclofen. I'm worse at night so I will probably only take it before bed unless I have a bad day. I also have some other issues to discuss with him, so it's good I'm going to get in.

I had a few good days with my leg, not better, just not so painful. But today we are back to stiff and painful.

I plan on asking him point blank what he thinks is going on. Or what is left to rule out I guess.

[nosrepmodnar]

Overuse would cause it, but it should have subsided by now.
I have been victim of this on weekends where I try to keep up with the kids.
Another thing is meds, have you changed anything lately.
GP changed my blood pressure meds and it took a month but I started having major spasms again and my gout flared (might be why the leg was spasming)
My podiatrist took one look at my med list and told me to stop taking the new pill (bystolic if i remember right) I did and while slowly both the gout and spasms lessened.
I am not spasm free, but I have not been spasm free for years now.

Good luck, maybe a good massage form a sports therapist might help, and it it doesnt it will still feel good and relax you.