spasms

A forum to talk about the general challenges of daily life with MS.

spasms

Postby robbie » Fri Oct 26, 2007 1:09 pm

The spasms I have in my legs are getting worse my right leg mostly jumps all day long; it is jumping as I write this. Also when I straiten my legs or stand up they hyper extend at my knees and spasm badly in my calves, it is very painful. I have baclofen but it seems in order for it to help I have to take so much that it leaves me useless and unable to stand at all. What do others do? I smoke mj and it really helps but I only do it at night but that will be hard not to change, the mj I have now is legal but I still don’t want to resort to smoking it all day long or does it really matter weather you pop pills all day or smoke.
Just like to her from others in this situation, I feel lost and desperate
Had ms for over 19 years now.
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Postby mom10789 » Fri Oct 26, 2007 1:23 pm

what about gabapentin
my husband even takes it for restless leg symdrome
what about sativex during the day
shell
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Postby jimmylegs » Fri Oct 26, 2007 2:47 pm

sorry robbie, i still haven't figured out my jimmylegs 100%, and it'd just be more pills anyway :( for me i think it's a toss up between iron and zinc - but i'm not sure yet!
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Postby Loobie » Sat Oct 27, 2007 3:07 am

Robbie,

You are in quite a quandry. The MJ question is easy. It's the same to me as taking pills all day long unless it's having other adverse effects on you. I used to smoke all day long on the weekends and it did nothing but help everything. My legs were better, eyes, bladder. Well about six months ago, it started having one effect I don't like. It still calms my nervous system down and helps the bladder and eyes, but it seems like it makes my legs (especially my calves) weak. I have since quit doing it ever during the day since I still have things to do. I basically don't smoke now until I'm "done" for the day and am sitting reading or watching the tube. If it doesn''t do that to you, I wouldn't hesitate to swap MJ for a pill.

Also, the detrimental effects you receive from smoking is also not a positive. I have recently ordered a new vaporizer from http://vapir.com. I had an old one I bought from a head shop and it didn't ever really work right. These portable ones from this website (the ones that cost almost 300 dollars) are supposed to be state of the art. It only heats the herbs up enough to release the good stuff and you don't get all the nasty shit you get from burning leaves! The smoke you get from burning it is supposed to have like 200 or so chemicals that are just the result of burning. Basically saying that the "active ingredient" is only a small portion of what you are inhaling. The one I currently have worked incredible a few times. You would hit it, you could feel nothing in your lungs, and couldn't really even see the smoke. It amplifies the effect (maybe because I hit it a few extra times because I didn't think I was getting anything), but we have to save our lungs if we are going to smoke MJ.

But if it's making you weak like it is me, I understand your hesitation. I tried again to smoke while football was on a few Sundays ago and I shot my legs for the rest of the day. I could get around, but one trip up the stairs and I was wobbly as hell. My theory is that it is a CNS depressant and now that there is more damage to my nerves that control my legs, it is taking it down to where it really affects me. It really pisses me off since it used to work so well, but what are you going to do? I wish you luck man. This disease is just a MF.

I recently met a friend of mine's dad who has MS. We've become buds and do a lot of sitting around together and watching sports. He is wheelchair bound for the most part (he can pull himself to stand to pee, but sits right back down in his chair), but he has no bladder and bowel issues or problems with his eyes. It just pretty much took his legs out from under him. This disease is just so f'ed up. It's just so different in how it affects everybody that I even hesitate to talk about the things that work for me since everyone is such a unique case. I hope your legs quit screwing with you, and I hope you get some peace of mind.

Lew
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Postby ewizabeth » Sat Oct 27, 2007 11:27 am

Hi Robbie,

I can relate to you on the painful spasms. I take Baclofen 10mg 4x a day and it helps a lot. I feel best when I move around a lot. Gentle stretching exercises help a lot too.

If I do too much, the pain is worse. If I do too little, it's bad as well. This is a frustrating symptom to deal with.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby Brainteaser » Sat Oct 27, 2007 4:56 pm

Hi Robbie,

My spasms have virtually ceased since recommencing 4-AP, although I take it mainly for spasticity. 4-AP might be worth a try.

Regards,
Phil.
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Re: spasms

Postby jordan » Mon Oct 29, 2007 12:53 pm

robbie wrote:The spasms I have in my legs are getting worse my right leg mostly jumps all day long; it is jumping as I write this. Also when I straiten my legs or stand up they hyper extend at my knees and spasm badly in my calves, it is very painful. I have baclofen but it seems in order for it to help I have to take so much that it leaves me useless and unable to stand at all. What do others do? I smoke mj and it really helps but I only do it at night but that will be hard not to change, the mj I have now is legal but I still don’t want to resort to smoking it all day long or does it really matter weather you pop pills all day or smoke.
Just like to her from others in this situation, I feel lost and desperate

I have the spasms in the calves also. Not sure if this will work for you but I massage some Flex-All Maximum Strength on the back of the calf. I use it also for other painful problems: joints, migraines (put a dot in the middle of my forehead), neck muscles that stiffen etc.
Flex-All Maximum Strength has 16% Menthol. It is very strong so only a little dot at first. It is cold heat. You will feel the burning but it will be cold. You should be able to massage your calf abit after 5 or 10 minutes and if possibly stretch the leg. It is the only thing I have been able to feel that it is working. I purchase it at Wegmans in Virginia for 7.99 a tube. This is what it looks like: http://www.drugstore.com/products/prod. ... catid=9320

Hope this may help some.
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Postby AllyB » Fri Nov 02, 2007 2:11 pm

Hey Robbie

I am not sure if you are going to pick this up now as I am jumping in a bit late. I am so sorry that you are having such a bad time and I really hope it improves.
I take baclophen 10mg 3 X daily for spasms - but too much can cause muscle weakness, so the certain amount of spasticity you need to be able to stand disappears and your legs are useless, so you are right, you have to titrate it to get the correct dose for you.

I also take neurontin 600mg 4 X daily and amitriptyline 25mg at night - both for neuropathic pain, plus Valium 2mg 3 x daily (as needed) for spasms. I also see a massage therapist weekly and use a whirlpool tub (not too hot), and do some stretches and other stuff that my physio showed me, which helps keep me more supple. I take Requip for restless leg syndrome too. I know it sounds as if I take a stack of pills (suppose I do!), but I am not normally too goofed out, just the "normal" fatigue that goes with ms and I feel a bit foggy at times and need to rest, but this is better for me than the terrible pain, and the heartache of not being able to walk very much.

MJ is totally illegal where I am for any disease so I have not tried it (except a few "party" tokes in my university days!), but if it gets you through the day, I don't see anything wrong with it - have you tried making tea from it? It might be a healthier option, and allow you to take smaller doses more frequently during the day in order to control the effect, or try Sativex.
Maybe try to get the spasms more managable with medication as mentioned or mj (or a combination of both) and when you are feeling a bit better, set up some sessions with a neuro rehab unit and they will help you with massage, stretching, and exercise which will aid you in standing/walking.

Speak to your doc too, he/she needs to know how bad you are feeling, and that they need to do something to help you NOW.

I have also read that intrathecal (epidural into the spine) baclophen can be very effective for controlling bad spasms, so you might want to read up a bit on that too, as a last resort.

I truly hope you soon feel less desperate, and would like it if you let us know how you are doing.

All the best
Al
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Postby Toyoterry » Sun Nov 04, 2007 3:08 pm

The neuro at my MS clinic allowed me to go much higher on the Baclofen than my previous ones. I take 30mg 3x daily and it has helped but not completely eliminated my spasms and spasticity. Neurontin didn't help me but Lyrica seems to be better. I take Lyrica for my neuropathic pain. Along with the Lyrica, I also take Amytriptiline at night. I used to have spasm so bad that it felt like my body jumped three feet above the bed.
Terry
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Postby gibbledygook » Tue Nov 06, 2007 11:56 am

Robbie, the vaporizer mentioned earlier is fantastic. It uses much less mj than spliffs, has very little tar and is therefore unlikely to be carcinogenic. I have found that magnesium and calcium taken in ridiculously large quantities has helped with spasms and spasticity. Also strong alcohol (like a shot of brandy) for desperate times but then again that is probably only a night time solution. Best wishes.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby robbie » Thu Nov 15, 2007 9:50 am

found this good reading:Is a spasm just a severe type of tremor?
: Dealing with Tremor

Types and causes of tremor


Tremor, defined as an involuntary rhythmic shaking of a body part, affects between 25% and 60% of people with multiple sclerosis (MS). MS tremor tends to affect the limbs, the head and neck, the vocal cords, and the trunk of the body. It can interfere with the ability to do everyday activities such as speaking, swallowing, writing, and walking.

It's difficult for scientists to tell exactly why people with MS experience tremor. Because MS affects so many different parts of the brain, it's hard to link the tremor to a single damaged area. However, they do know that MS tremor results from MS-related damage to areas of the brain that control movement.

People with MS may experience a variety of different kinds of tremors. The most common type of tremor in people with MS is intention tremor. Intention tremor occurs only during movement, not when a person is at rest. Intention tremor develops and gets worse as the person tries to move their body parts towards a specific target (e.g., reaching for objects, writing). It is worst during small, intricate movements, such as those needed for handwriting.

Postural tremor is a type of tremor that occurs when people are trying to support their own weight against gravity. This means it would not occur when a person is lying down, but it could happen when they are sitting or standing.

Rest tremor is not common for people with MS. This type of tremor occurs when someone is at rest. In other words, it happens when they are not moving a body part or supporting it against gravity.

Nystagmus is a type of tremor that affects the eye muscles, leading to uncontrolled eye movements.

MS tremor can range from mild to severe. When tremor is very severe, leading to large back and forth motions of the affected body part, it is called gross tremor.


Here is the site. <shortened url>
Had ms for over 19 years now.
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Postby robbie » Thu Nov 15, 2007 3:06 pm

thanks for all your replys, i am on an emotional ride. some days i can lift my feet with my walker mostly i can't. it's evening now so i will smoke some dope have a couple beers and go to a place where ms doesn't really matter. i try and post some things that might benifit some but i don't know. thanks anyway rob(aka robbie)
Had ms for over 19 years now.
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Postby Loobie » Thu Nov 15, 2007 5:34 pm

Hang in there dude,

I don't know what to tell you because I think I know how you feel. Maybe not really since I'm still a 3, but I've been pretty far down about it. They only thing I can say is you've been bummed before and you've gotten throught, so "This too shall pass".

Hang in there, we always enjoy your take on everything.

Don't let it get all of you.

Lew
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Postby cheerleader » Fri Nov 16, 2007 10:46 am

Hey Rob-
I really appreciate your advice and wisdom...I'm so sorry the spasms are getting more difficult for you.

I asked advice for spasms on this thread-and Jimmylegs got us going on magnesium.

http://www.thisisms.com/ftopict-4427-sweet.html+sleep

We've found Natural Calm (a magnesium supplement) helps take the edge off.

our thoughts go out to you-
AC
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Postby MacKintosh » Sat Nov 17, 2007 7:10 am

And I read this last post as I was about to say 'take a magnesium pill'. It helped me during flagyl pulses, when I felt a little jumping in my calves and it's helped a friend who was waking up in the night almost every night with severe leg spasms and cramping.
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