Multiple Sclerosis (MS) Support Group

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tarabunnyears 10/29/2010

My worse symptom is muscle spasticity. The worst is in my thighs. But when it goes into full force, it is my shoulders, arms, hands, neck, throat, everywhere.

I scream in pain. My husband beats the crap out of them, but I hurt his hands because my thigh is literally as hard as a brick.

I am on Tizanidan and Bacolfan. They provide minimal relief. I also use Soma... which has BAD side effects.

The Dr upped my tizanadine but I cannot sleep all the time. It knocks me out.

I have honestly wanted to take a knife and cut my muscle, it hurts that bad But yes, I know, it would really hurt then. :P

Please, does anyone have advice? A different medication? Tricks? Anything. I cannot bear this any longer.

My doctor is not really taking me all the seriously about my pain. And I know I should find a new one, but he is new, my old one moved across country and he is it for this state. Very few neurologist and none take MS patients.

I will try anything. I had even considered marijuana. But no clue where to get it... and my luck, I would get caught.

Please someone give me the magic cure.

MSKC 10/29/2010

Tarabunny,

I feel your pain.....literally!! I started taking on Neurontin and one Baclofen just at night(cause they make me sleepy) and I have been amazed how much less spastisity I have in the morning. I am able to get up and move around a LOT better and faster than I have in a long time. I have also been on Low Dose Natrexone 4.5 for over a year and it has been a total miracle for me and others(lowdosenaltrexone.org). Also, I had my vitamin D level checked and it was extremely low...16, so I take about 5000 units of D3 everyday and spend more time in the sun as directed by my doctor. I think all of these have helped me. I also take Zanaflex and/or Valium as needed. I am in SC, so it will be LOOOOONNNG time before marijuana will be legalized as a medicine. I am so sorry that you hurt, but you are in good company to get help and support!!

JaniceKay 10/29/2010

@ Lorrie

Great info ~ thanks for taking the time & trouble to share all of that! :-)

MSKC 10/29/2010

One more thing....when I get HORRIBLE lower back spasms, the only thing that helps(and it does so quickly)is to apply an ice pack. So, since this usually happens at night when I am in bed, I sleep with an ice pack right next to me so that I don't have to get up and get relief a lot sooner. Honestly, this has been the only thing that has helped. As suggested too, I would seek out a neuro that you can talk to and that understands that MS and pain go together.

tarabunnyears 10/30/2010

While many of these things are not working for me, many of the things you guys have listed, I have not tried. I am taking a list to the doctor tomorrow and we are gonna experiment until we find what works.

You guys rock!!

lchoppel 10/30/2010

tarabunny,
I'm sorry to change the subject, but your audio blog was terrific! I've never heard of an audio blog,and I enjoyed listening to your voice and so sorry for the struggle you experienced on Friday. I felt so much more connected to you than reading your posts! I'm just glad you were able to dull the pain for the weekend,and I wish you the best in finding a solution. Keep fighting! If anyone can find a solution, it will be you. I can tell from your voice that you will get this problem of yours taken care of. Best, Lynne

deleted_user 10/30/2010

Hi tarabunny,

I've sent you a PM. Plz take a look.

Mark

deleted_user 10/30/2010

xanax has an anti muscle spasm drug in it I think.It sure helped my spasm pain, a LOT until my doc took me off of it now I am dying with pain again.

deleted_user 10/30/2010

i had my husband take a short video of me in "kinda the same" problem. was only two minutes. after the dr. saw it, he took me seriously.

think about it.

i wish you so much good luck.

lorrie

deleted_user 10/30/2010

i had my husband take a short video of me in "kinda the same" problem. was only two minutes. after the dr. saw it, he took me seriously.

think about it.

i wish you so much good luck.

lorrie

deleted_user 10/30/2010

I really hope you have a GOOD MS doctor from a bigger city now.
My spasticity problems have been getting worse over the last ten yrs now. And now that we moved back to hubby's home town inbetween Milwaukee & Chicago there's a lot better doctors to chose from. Minnesota & upper Wisconsin had nothing but beautiful wildlife & in the sticks doctors.
Since 1975 we've changed doctors, prescriptions & treatments & diets a lot. Now they're getting serious about my heart & MS etc.
Over the next 2 months I get a baclofen pump installed, a sleep study, another bone density, & more pulmonary tests, a urology specialist and a better orthopedic doctor.
So far the Tsyabri treatments are doing ok.
Let us all know if you're getting more luck soon with your treatments etc.

tarabunnyears 10/30/2010

Thanks everyone. So many to reply to, and I am having another bad day.

lorrie, that is an excellent idea. I think I will do that.

Mark, I will respond to the email once I check out the link and feel better. Typing hurts right now.

I was giving pain meds just for the weekend until the doctor can see me. It did not take the pain away but did take the edge off and thus more bearable. But, the 2nd time I took it it cause me to have a pancreatitis attack. An issue I have had for 19 years and many meds cause it.

If I did not respond to you individually it is because typing hurts. I really do appreciate it and wrote all the ideas down for my dr visit.

deleted_user 10/31/2010

What about the mew MS drug that is approved for all kinds of MS-its to improve walking speed by improvinfg the sodium patasium transmission between nerves---I had read much on it when it came out - now I'm not certain of the details but it helps some and it doesn't others another one of those you have to try it to see if it helps. Ampyra???

deleted_user 10/31/2010

Baclofen pump? All that I know about it is reference in Reply #3 & 4

http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/10737571-anyone-have-baclofen-pump

deleted_user 10/31/2010

I've had a lot of luck with daily stretching & exercise as well as magnesium. When things flair up, acupuncture and xanax are the only two things that help. Xanax helps me sleep but the relief I get from acupuncture is immediate and I don't get the nasty side effects that muscle relaxants cause me.

deleted_user 10/31/2010

I get bad spasticity too and I have 3 ways of dealing with it. 1.) stretching 2.) cannibis 3.) Dronabinol I'm surprised none of the previous posts mentioned Dronabinol. It's the generic version of Marinol. (the pharm version of THC, tetrahydrocannibinol.) So if u cant cop a bag of mary jane give dronabinol a try.

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