Multiple Sclerosis (MS) Support Group
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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
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Usually I get a daily influx of emails on health topics. An article from Dr. Mercola really stood out recently though because it mentioned that fat cells have their own mitochondria. Not only was this the first I'd heard of this, he also mentioned that fat serves a purpose in our metabolism. Another new factoid for me. The bottom line for me was to appreciate that even our fat cells play a...
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I just do not feel well and I really think that it's because I cried yesterday on my way to work about my Aunt who is in the hospital. I don't think that we will have her much longer. She is very frail. Now she needs help eating. So, this is the third time in a year that I felt this way after crying. I think crying releases toxins into my body. I also worked up a sweat at the gym...
My feet, ankles, calves, thighs, back, neck, hands, throat, everywhere.
I beg for help but nothing helps.
On a daily basis, baclofen and valium taken together helps me.
but when a bad spell hits, it does not touch it. I just try hat baths, showers, crying, and to get through.
I wish there was a better answer.
I cannot take pain meds as they set of pancreatitis for me. So that is no help. I do take tremadol to try and help. Not sure it really does much.
I am currently searching for a new neuro, but the thing that frustrates me is this is the most painful and debilitating symptom I have and yet the one they don't like to address much. I don't think they truly understand the pain.
I hope you find answers.
Steroids had no effect and I was admitted to to the hospital to undergo plasmapheresis for 5 days. The worst part about it was putting the catheter into my neck and the pheresis made me a little sick to my stomach.
Anyway, I was distraught because the symptoms hadn't subsided completely by the time I was discharged, but my doctor said sometimes it took a little while after the process was over.
The numbness and pain gradually went away (within 2-3 weeks of the pheresis) and one day at work, I was walking, and my friend said "Amy, you know you're not limping, right?" I had gotten so used to dragging my foot, I didn't even realize it had gotten better. I've had no problems with my legs since, suffice for the occasional strange MS pain...
I hope that this is might be an option for you, because it worked wonders for me. I am 26, and had literally just been diagnosed, and was quickly having more and more pain, and a harder and harder time walking. I truly feel that this helped my leg, and my spirits.
P.S. I'm sorry for the long post...and if this type of treatment is not helpful in treating your type of pain.
My first thought was that your Magnesium intake is a low dose The lowest dose I've heard is 600 mg. day. I take 1000. You might try bumpin this up a bit from 400 and see if i gives you any relief. People say it really works, but I find that Magnesium is only a bowel regulator for me.
Another shot is to talk to your pain management group about Marinol, synthetic THC. I told my PMS doc that I tried pot and that it helped with my leg spasms. I too am having horrible leg spasm's that baclofen isn't taking care of, so they put me on Marinol. It seems to help some, but I've only been on it one week. It's a thought?
I'm sorry you are going through so much pain. There has to be an answer for you. I'm going to throw out the kitchen sink to you! How about physical therapy with massage? Maybe if you get your massages with PT insurance will pick up the bill? Dantrium is an antispascity drug I haven't heard you mention. Also muscle relaxants such as Valium, Librium, or Robaxin. Some people find that the over-the-counter medications threonine and quinine are also helpful with spasms. Also have you considered nerve blocks or motor point block? Phenol is injected into the affected nerve which chemically damages the nerve and interferes with its function for up to 3 months. This temporary destruction of the nerve prevents the affected muscle from contracting and allows you to feel more comfortable and may also help improve gait and mobility.
My spasms come in the evening, like clock-work. I really don't understand your comment on Tegretol and home PT so I hope I haven't provided conflicting info here. I wish you the best and I hope some of these ideas help.
I really hope you find some relief soon!!!!
This whole situation sucks. MJ should be available nationwide for people in this situation. I know it helps some people. My spasticity Dr. supports my using it and his stroke, spinal cord injury and MS patients have told him it helps them. I just got this problem with the pain clinic situation.. It helps me to hear what has worked for all of you and that at least two others have these 12 hour clockwork type spasms. Only because I know people with spasms but none on a schedule!
I never really had spasticity until the past year or two. I believe it is due to accumulated spinal cord damage from having MS so long. The only thing I have not tried is Neurontin - just hate to be on another drug.
So still looking for an answer. Thanks for sharing your ideas. I really do appreciate it. This is one of the most disabling things for me in dealing with MS.
Melanie
Stretching is so important. And when I go on and on about magnesium all the time, it's with the information that most of us are deficient in it and that is why our muscles can't relax.
I sure hope you find what helps you. MOving, stretching, maybe even a glass of wine in the evenings.
Best to you in conquering this.
I used marijuana plenty in my younger years (for fun, of course), but Mississippi isn't tolerant of it yet and I also fear the brain fog it leaves me with after prolonged use--my job requires me to be on top of things mentally. What about the synthetic THC? Anyone have any luck with that yet?
I really hope things start looking up for you. I don't have MS but my best friend does, so I'm always on the lookout for possibilities for her. Her doctor has suggested anti-depressants to help her, but right there you have an incredible range of variables.
I've had issues with depression for a large part of my adult life and have tried MANY anti-depressants. I found ONE that worked for 9 years and then suddenly stopped. Both anti-depressants and anti-anxiety drugs have two components that you need to ask about (or ask yourself, if you are one them): 1) Is it helping? 2) Can I tolerate the side-effects? Finding a drug that helps and whose side effects you can tolerate is like finding a huge diamond in your own back yard.
My best friend occasionally uses Percocet, but like you, she doesn't like to be zoned out for a large part of the day.
The spinal cord stimulator sounds promising. I actually had something similar for horrible pain in my head, neck and right shoulder. I heard about the remedy totally by accident (or divine intervention; hard to tell.) It involved a highly trained neurosurgeon taking an electrified needle and zapping the nerve ends (not the roots) that were causing the pain.
I had to find out about this by myself; nobody offered to tell me about it. They don't like to do it because it is costly. BUT IT WORKED!!! I can't remember how many years it has been since I had the procedure, but there has been no recurrence of pain, and before that, I pretty much lived in a fog of drugs It was awful.
The spinal cord stimulator is certainly invasive and sounds scary, but just think - if it works - what a wonderful thing that would be!
All the best in 2012!