Spasticity experiences

[piper]

I have been having more frequent spasticity issues. My entire left side will seize up; leg twists, muscles are hard and cannot be relaxed, my arm and hand curl up, muscles get hard, I think even my side and neck muscles harden. When the muscles release, my right side will feel like it is being put in a fire.

Because the episodes were becoming more frequent I did a 5-day round of steriods. It didn't make much of a difference.

Now, after my left side releases, my right side is seizing up in the same manner. The nerves afterwards feel like someone is taking an iron-hot wire stripper and stripping my nerves. My legs will be weak for hours afterwards too.

When I talked with my neuro I said I wanted to try steriods first. He mentioned 2 other treatment options if the steriods did not work. #1 - Botox. I'm not sure how that would work since my legs and arms seize up. Also, now it's both sides so would the Botox injections go on both sides? Option #2 - Baclofen pump. I had tried the oral medicine but it really messed with me.

What has been your experience in dealing with spasticity? I know many of you have had both treatment options. What were your experiences?

Thanks!

[Tia1]

I'm sorry that this is happening to you.

I don't have any recommendations for treatment but am recently feeling the affects of spasticity myself. I am interested also in what has worked for others.

I hope that you find something that works for you soon.

[Kimba22]

Hi Piper,

I'll share my personal experience, although it will be different from yours.

I have a baclofen pump, which has helped with spasticity in my legs. I was on the highest oral doage of Baclofen that's recommended, which still didn't provide me with effective relief. I couldn't take Tizanidine, it just made me too dizzy to function. I have spasticity in my back, but my legs get too weak when the dosage is set high enough to help with that. I have had relief from the MS hug since I got my pump.

Because the delivery system is different, you won't have the side effects associated with taking baclofen orally. The medication (it's in liquid form) goes directly to your spinal fluid. It's much more effective this way, and the dose required is much, much lower than orally. The medicine isn't crossing over any other systems in your body, so you won't have the side effects associated with the oral medication.

When I had my pump implanted, I wasn't having any problems with my arms. So, the catheter that delivers the med into my spinal fluid was placed at T2 or T3 (I don't recall the exact placement, but was told anything higher would affect my arms ... as far as I know, C7 and T1 affect your arms). I've been told by a few drs. mine is the highest they've seen.

I have been told this delivery system, regardless of the catheter placement, does has some affect on your arms. Personally, I haven't noticed this. I'm now having spasticity in one of my arms, so if it gets worse, I may need to try Botox injections for relief. Since I can tolerate oral baclofen, we might try adding it and reducing the dosing from my pump.

Botox injections were approved to treat upper limb extremity a few years ago, but I've had no experience using the drug for this. I have had Botox injections for my back, which helped a bit, but not to the extent we were hoping for. It didn't hurt - but I can't recall if they used a lidocain injection first. You would need injections into the muscle groups involved, which would require multiple injections to treat each of your limbs.

The pump requires surgery to implant the device, and you will need a trial dose to see if this would help you. You have to commit to having your pump refilled with medication several times a year. (It would depend on your dosing and the size of your pump). The actual pump requires replacing after several years, but that surgery is much simpler than the first. My first surgery was still done as an out-patient procedure. The Baclofen pump has been very helpful for me.

Botox injections would be a simple, in-office procedure. I'm not sure how long the relief would last before you needed more injections.

I'm not sure if it will take a combination of both therapies to get relief from the spasticity. I can only imagine you're ready to try whatever it takes to relieve it!

Best wishes,

[rdmc]

I, too, have a pump. Took oral for years, but maxed out on dosage, plus it did nothing for my spasticity at that point.

Wow Kimba, that is a high catheter placement...mine is at T9. I believe some SCI and CP patients have high placement. I guess too high and it could affect your repiratory muscles or core muscles. I think it's BlueGiraffe that had her pump turned down due to it causing weakness in her upper body, making it harder to transfer (BG, if I got that wrong, sorry.)

I do have spasticity in one arm, and it did lessen this a little even though catheter is at T9. Physiatrist said that sometimes loosening back muscles helps some with arm spasticity.

As far as botox, it's only been recommended for me one time, and that was for my tongue. I get spasms and my tongue gets pulled to one side and back toward my throat. At one point my previous neuro sent me to an ENT to see about doing botox. The ENT wanted to inject Botox into the back of my tongue...couldn't quite imagine that. And since then I've had a speech pathologist, an MS specialist and my present neuro say that probably isn't the way to go.

Good thing about botox over pump is it's a minor inconvenience for arms/legs (no surgery or hospital stays...I did have hospital stays with both pump surgeries, and an infection after one of those stays)...bad thing about botox, it's not permanent and you have to do it every 3 months. But the good think then is if you don't like the results...it wears off in three months

Hope you find something to help.

[piper]

My neuro is going to schedule Botox injections. My face will still look the same but my arms and legs will look 10 yrs younger!

[piper]

So yesterday I had the worst day ever. 3 separate episodes. One episode was THE worst I have ever experienced. Both sides seized up separately and then at one point were seizing up at the same time.

I wish they made "epi" pens for situations like this. So like an epi pen stops an anaphylactic shock, the pen could stop the muscle seizure. We need to get someone on top of that. I would be very welcome.

[Kimba22]

Sorry to hear about your day yesterday. Sounds pretty darn awful. I hope you're scheduled to get the Botox injections soon!

Best of luck!

[piper]

To go the ER or Not...That is the question.

I have never gone to the ER for any of my problems. In hindsight I think I should have on a couple of occasions but then again, I'm not sure. I don't what what is accomplished by going to the ER. Yes, they could start me on Solu-Medrol. However, having just completed a 5-day round 2 wks ago they would not do steriods.

I know others have gone to the ER. I just never know what to do. I used to think, 'well, if I go blind, even in one eye, I would go to the ER.' But honestly, I would probably just call my doctor. I just never know if the ER is the right choice.

[22cyclist]

Piper: They won't give you steroids since you just had them 2 weeks ago, plus they didn't work. They may give you extra Baclofen. I take 20 mg 4x/day and in addition to that I take Zanaflex three times per day. So they may give you some of these drugs. My drugs do not help much anymore and I am going to get the pump. I hope you will consider it as well. In the ER I suspect the other thing they will do is give you some pain medication. It is better that sitting at home in pain. Now that it is Monday though, I am sure you have called your neurologist. If not, the next time you call ask for Zanaflex to be added, and for the max dose of baclofen. After that, it is time to consider the pump.

For immediate help, do consider the ER. The least they can do is help with pain medication.

I am so sorry this is happening to you. Let us know how it goes, OK?

Take care
Lisa
Moderation Team

[piper]

I do take Zanaflex. I only take it at night or immediately after an episode. I cannot take it regularly during the day because exactly 1/2 hr after I take it, I'm knocked out for at least 2 hrs.

I have tried Baclofen, but it made me more dizzy and felt very drugged. So I can't take Baclofen either.

I have an appt. Friday to start the Botox process. Hopefully the Botox will help. If it does not, then they will move me to the Baclofen pump. I understand that it does not have the same effect as the pills.

Thank you all for your input and concern!

[Temagami]

Have you tried magnesium? (Must be taken with Calcium with a 2:1 ration of Ca:Mg).

[piper]

No, I have not. It has not been suggested. I will ask about it. Thank you!!

[LSPaul]

Spasms & Baclofen - alternative?

Hi - I'm a new member and just starting to read posts. It's actually my husband who has MS. He's on a super high dose of Baclofen and also does Botox. While it does relieve some of the discomfort of his spasms, his legs have been unable to fully straighten out and are in "locked" or frozen position. I've been trying to figure out any alternative solutions so we don't always having to resort to upping drug dosages. Wondering if anyone has pursued holistic or alternative suggestions for spasms. Good luck and thanks in advance!

[22cyclist]

LSPaul: Thanks for taking care of your husband. Welcome to MS World! I hope your husband will sign up and come on one day too. My suggestion is Physical Therapy. They can stretch your husband out weekly or bi-weekly and give him exercises do at home to stretch himself out when you are not there. I do this and it has helped my spasticity tremendously. I was just diagnosed with SPMS from my RRMS for 10 years, so my spasticity is pretty much constant. I also am on the highest dose of Baclofen (80 mg per day), and Zanaflex.

Another option and one they have talked to me about is the Baclofen pump. This may be a good option for your husband as well, but I wouldn't go to this without the stretching. If you choose this, definitely do both.

Take care and hope he feels better soon!

Lisa
Moderation Team

[Fed Up]

My primary gave me Sinemet (off label use) for Restless Leg Syndrome. It accidently helps release the spasticity. Then it wears off. fed