Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Sorry in advance for long post. Just really need ideas if you have them.
I've posted about these spasms before but I still need help. Nothing is working, No Dr sure what to do and noone can explain the fact they happen in a regular pattern every day. Usually 12 hours apart and the only thing that suppresses them is percocet. No other drug works. I do not want to be drugged out 24/7 which I am currently. MJ is not an option right now. If it is found in my urine I'm kicked out of the pain program - no more percocet. Don't even know if it will work. anyway.
I have taken Baclofen up to the 80 mg limit - didn't stop spasms and made and me too weak to sit up. Baclofen pump ruled out because both neuro and spasticity Dr. say I wouldn't be able to transfer. As it is I can't do that now anyway because of how bad the legs are. Spasticity Dr. says no zanaflex... more than 1/2 his patients can't tolerate it. I am on so many drugs anyhow it isn't a good idea. Neuro prescribed Tegretol 100 mg 2X/day. Been on it 10 days and everything seems worse. Very weak
My old neuro said two things: at the beginning and end of day my feet are looking for sensory input and can't find it. Thus the spasms (??!!) She also tells me my only option is assisted living - so I left her. Very bad bedside manner and always been odd - but knowlegeble. Also said these spasms can be violent enough to herniate a disc and in the beginning that was how bad they were.
Next idea was to see a neurosurgeon (who does baclofen pumps and spinal cord stimulators) and talk about the situation. A spinal cord stimulator has been showen to stop spasms as a secondary benefit. But that is a scary invasive step. Still plan to do that though.
My question to those of you out there that deal with spasms -- do you have them on a predictable schedule? I know they are coming from damage to the spinal cord.. They are hip flexor spasms not tonic spasms. They pull in rather than jerk out (tonic).How do you treat them? Did tegretol work? I do not have TN.
I got to interrupt this signal to the brain that causes this. I'm spending almost 1/2 my monthly income on weekly massage just to manage the pain and pulled muscles. I think I should stop the tegratol. I can't do home PT because of impact of Tegretol. I have to regain ability to get out of bed on my own.
Also taking magnesium 400mg twice a day. Done Botox - hasn't worked
Anyone got something that works for bad spasticity? Any thoughts appreciated. I'm getting desperate. Really don't know what to do next.
Melanie
I've posted about these spasms before but I still need help. Nothing is working, No Dr sure what to do and noone can explain the fact they happen in a regular pattern every day. Usually 12 hours apart and the only thing that suppresses them is percocet. No other drug works. I do not want to be drugged out 24/7 which I am currently. MJ is not an option right now. If it is found in my urine I'm kicked out of the pain program - no more percocet. Don't even know if it will work. anyway.
I have taken Baclofen up to the 80 mg limit - didn't stop spasms and made and me too weak to sit up. Baclofen pump ruled out because both neuro and spasticity Dr. say I wouldn't be able to transfer. As it is I can't do that now anyway because of how bad the legs are. Spasticity Dr. says no zanaflex... more than 1/2 his patients can't tolerate it. I am on so many drugs anyhow it isn't a good idea. Neuro prescribed Tegretol 100 mg 2X/day. Been on it 10 days and everything seems worse. Very weak
My old neuro said two things: at the beginning and end of day my feet are looking for sensory input and can't find it. Thus the spasms (??!!) She also tells me my only option is assisted living - so I left her. Very bad bedside manner and always been odd - but knowlegeble. Also said these spasms can be violent enough to herniate a disc and in the beginning that was how bad they were.
Next idea was to see a neurosurgeon (who does baclofen pumps and spinal cord stimulators) and talk about the situation. A spinal cord stimulator has been showen to stop spasms as a secondary benefit. But that is a scary invasive step. Still plan to do that though.
My question to those of you out there that deal with spasms -- do you have them on a predictable schedule? I know they are coming from damage to the spinal cord.. They are hip flexor spasms not tonic spasms. They pull in rather than jerk out (tonic).How do you treat them? Did tegretol work? I do not have TN.
I got to interrupt this signal to the brain that causes this. I'm spending almost 1/2 my monthly income on weekly massage just to manage the pain and pulled muscles. I think I should stop the tegratol. I can't do home PT because of impact of Tegretol. I have to regain ability to get out of bed on my own.
Also taking magnesium 400mg twice a day. Done Botox - hasn't worked
Anyone got something that works for bad spasticity? Any thoughts appreciated. I'm getting desperate. Really don't know what to do next.
Melanie
mmj is legal as a medicinal in Colorado. However, if you would not be able to continue your program then it would not be something you could do.
I've been getting real bad ones now too (in my feet). They morph into a shape where the big toe bends down and the other toes are all stuck together and WOW does this ever hurt!
I take Valium for spams. Sometimes putting one of them under your tongue (for fast delivery to the body) helps.
These spasms are very painful.
You might try some Arnica spray on your feet. You rub this in and just the massaging action seems to help also with the Arnica spray. You can buy this for less than $10 for a 4 oz. spray bottle of it.
You might give this, the under the tongue Valium and a pain pill of whatever it is that you take for pain.
I find that sometimes if I get up and move around a bit (if this is possible for you), just movement helps as it gets your circulation going and hopefully will assist in releasing the spasm.
You have my sympathy believe me and I just learned something here too -- never knew that spams came from the spinal cord (I'm sure mine has plenty of lesions on it ... I really don't even want to know at this point!).
Hang in there Melanie!
Sam
i take valium..soma..potassium...mag....hot showers make them worse..massage helps.and hands on pressure and ice packs.i have them twice a week by professional.(massage)..im going to do more research and get back to you as im scared of the ones in my throat..and in legs,feels like my limbs will break!!!!!!!!!
ill get back to you..keep your chin up!!!!!!!!
try this info...it talks about surgeries for uncontrolled spams
I experience spasms in my back all day, everyday. On a scale of 1-10 they were on average about a 8 everyday and every now and again they were a 20 before I began what works for me. Now they are about a 2- 3 on a daily.
2 shots at hospital- lol- didnt do anything-it took rest- and very strong muscle relaxers- i got from a friend-took 3 days- i didnt care-id do it again!! terriable!! they are-robaxin-750 mg- but it worked!! i took 3- or 4 a day for 3 days- dont need them now- u do anything to get better- well i would- i told dr- he put me on them-lol- one a day- but its nice to have something that works!! hugs!!!!!!