more on spasticity

[pennst8r]

Hi All! I have posted before re my symptoms in general and "quest" to find the cause. I am having such a struggle with my spasticity, and was wondering if anyone has encountered something that helps better than baclofen. Had been on it 4X daily for a few months. Found that it does stave off SOME of the spasms, but still they come. They do seem shorter in duration. Seemed to have no real effect on rigidity though, and gave great headaches.  Those I've chatted with know I recently fired my neurologist. While I wait to get in w/ a new one (August 3rd forst available), my PCP is trying to handle this (at least HE'S trying). He tried taking me off baclofen and put me on skelaxin. What a disaster!
Spasms came fast and furious, plus the side effects!!! Mademe really nervous (not by nature a nrevous person), and anything I ate (even toast) made me sick as a dog. Tried to ride out the side effects and give it a while to work, but after a week on the floor most of the time from leg/ other spasms, I couldn't do it anymore. PCP put me back on baclofen. After the skelaxin, that baclofen headache doesn't seem so bad:)

To make a short question long (ha ha), has anyone found something that is more helpful for spasticity than baclofen? My PCP is open to suggestion, as he freely admits he's a bit out of his league here, but he's trying. I know August 3 doesn't seem so far away (especially for those of you who have waited 18 months just for a consult), but it's an eternity to me right now. I know you've been through it or are going through it, so I'm "preaching to the choir".  Anyway -any thoughts???

Penn

[T-lynn]

I just get tired of taking meds I guess.

I will be very honest the quinine is the most effective for my spacticity,but with me having MS it started created severe rining in the ears.Quinine is an old remedy.

The combo of meds can be sedative,it took a long time to get use to them and once we got the spacticity under control ,I was able to stop the quinine all together ,then I was able to lesson the dose of zanaflex and was able to stop that one.And just take the valuim and baclofen.

I had 2 MS attacks in a 2 month time period and the spacticity and myoclonus has really gotten bad , so here we go with all the meds again.I also take pain meds,rebif (MS  disease modifying med) nexium,oral prednisone taper down from solu-medrol infusions---,on antibiotics from a sore that won't heal because of the steroids and the steroids raise my insulin levels so I'm on insulin meds and chantix (stopped smoking) and ativan at night.

Don't get me wrong the combo has been effective and is now and it gives me great releif,but with all meds there's side effects and personally I preferred just taking the few.

The DRs at the CCF are awesome.

I seen DR.Rebecca Kuenzler,neuromuscular she done a fantastic job with the spasticity and ran all the appropriate test.She helped put the combo of meds for the spasms together.She is darn good at what she does.She however did not DX my MS,I was in the early stages and my neuro here DX'd me and I still see DR K.Once a year for follow-up.

I think you'll be very happy with the clinic.

I can relate to the buzzying,half my right leg is numb and I wear leg braces to walk and not trip.

Penn I really hope you get some releif to the spasms,I can honestly see why a dog chews there leg off when they get stuck in a trap.Spasms are painful,especially when the muscles pull and ya can't extend the joints.I've woke up at night to where my knees wouldn't extend.I now sleep with pillows under them to take some of the pressure of them.

Ask your DR about the quinine,it truelly provides much needed releif.ya take it at night and it really works.

I'm glad you are stretching that is so important as painful as it maybe.PT has really helped me.

[pennst8r]

I really appreciate all your advice. All the options sound a  little scary!  I'd like to avoid needles for the time being. I know that depending on what diagnosis I end up with (if I ever find one), I may not be able to avoid them for long. So I'll avoid them while I can. I will ask my PCP re the quinine. T-lynn - what is it about your combo of meds that you hate? Are there ugly side effects? I've had enough of those lately, between the **** (pardon my French) they had me on in the past few months. The baclofen does help, but not nearly enough. The rigidity is almost always there. The spasms still > once daily, but they do not seem to last quite as long on the baclofen. I did get Therabands and am stretching several times daily. Still really rigid, but can get around better.

It appears that I will have to wait until August afterall to see the new neuro. Contemplating going to Cleveland anyway. My insurance says my PCP would have to send me, and it would cost quite a bit out of pocket. If I can get some sort of resolution, I suppose it would be worth it. The spasticity has really taken over. I barely notice my buzzing feet anymore over the spasms!

An added thought - probably nothing, but I remembered that around when my symptoms started, I had a flu shot, after which I promptly got tracheal bronchitis. Wish I could remember which came first though. Will have to ask my PCP when I got the bronchitis. Got the shot @ work, so I can find out when that was.

Thanks for all your help!

Penn

[T-lynn]

The baclofen pump should be a last resort at this point,Penn needs to find the cause first.

I have been offered the pump and rejected the idea.I know several that have had great success and others had to have them removed.

[hatixhe]

Hi there,

Have you ever considered the baclofen pump, I know a lot of people who have it and it has really improved the quality of thier life by at least 80%?

[T-lynn]

Here is a few suggestions on spacticity.

I take baclofen 10mgs,valuim 5mgs,zanaflex4mgs ---4 times a day to control the spasms and cramps.I hate these meds.

What I found most effective was quinine and 325 mgs at night.This is an old rememdy and the mosquito's don't bother ya.Prescription only

I had my best reduction in spasticity while taking the quinine 3 times a day,but it caused some hearing damage,well they are not sure if it was the quinine or my MS.

Drinking tonic water which contains quinine and at walmart in there vitamin section has a med thats available over the counter for leg cramps that cantains quinine.

I still will take the quinine when the rigidness sets in,in the heat drink plenty of water,avoid caffine(my down fall )and PLEASE stretch multiple times a day.

[Quixotic1]

Here's another page on Spasticty.  I don't think there is evidence for it, but it wouldn't hurt to take a magnesium supplement twice a day.  Do not take the ones that are in the regular drug stores.  They are almost all magnesium oxide which is not very bioavailable, but is VERY cheap.

I take Magnesium orotate

other good salts are magnesium aspartate, glycinate, taurate, succinate.

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1658&CFID=2181304&CFTOKEN=95744997

Quix

[Quixotic1]

I'm sorry I do not know much about the treatment of spasticity beyond the use of Baclofen, but I do know that often a combination is needed.  I have found this to be a useful site on the subject:

http://www.wemove.org/spa/spa_tre.html

Karzme is right.  They are using Botox in treatment of spasticity.  I don't think the cause matters.  You might approach your primary - since he's trying so hard and give him info from the "We Move" site.  Maybe adding something to the Baclofen can help.

Quix

[karzme]

I just read on med md about how they are recommending botox to help with spasms. It's injected into muscle. not sure if aproved for treating MS spasms though. But wanted to let you know.