Painful back/leg spasms

[gdmcor]

Hello everyone, It's been a long, long time since I've needed to be here, but now I do. I still enjoy reading posts from time to time, and it's good to see people who have been here forever.

Anyway, I've had MS for about 28 years, SPMS, but still have major flares from time to time. The last time was in 2007/2008 with urinary retention as the main problem. I have daily symptoms of fatigue, balance, dizziness, and weakness in the limbs problems. However, I've never needed a walking aid, that is until now.

I'm in the midst of a very bad exacerbation. This past week I've had several bad episodes of left back/leg spasms, including my left arm. Each time I was walking, would get sensations of weakness in my leg, and then would have to go to the ground in terrible pain, arm as well. It would last about 15 seconds, then I could get up. The only way I will be attempting going anywhere now would be if a wheelchair was available. At home, I'm okay, taking it very slowly and stumbling around.

My PCP is attempting to get me an early app. with a neurologist, as I stopped seeing my last one a few years ago.

What I'd like to ask is, has anyone had spasms like this?
What has helped medication wise, with the least side effects?
Would a course of IV steroids be a good idea, I've never been on them?

Thanks in advance and hope to hear any ideas, suggestions or comments! Gretchen - Oh, I've also never been on any of the injectable meds, they came later, years after my diagnosis. I did not even see another neuro until 2000, when things became more progressive.

[Jeanie Z]

:) Hi and welcome. When I started having cramps in my legs at night I read in the pharmacist article that placing a bar of Ivory soap under the sheet by your legs would prevent them. It works for in the bed. They also suggested quinine water. I have not tried that as my cramps always occur at night. Sometimes a little salt can help stop them. Good luck. Jeanie :)

[agate]

Hi Gretchen,
Your user name rings some bells but unfortunately I can't remember any details. Thanks for explaining about your situation.

I do get something vaguely similar though I don't usually fall to the ground with my episodes. The pain and weakness are always just in one leg.

I should add that I sit in a wheelchair most of the time at home, and I'm at home most of the time. Home is an apartment of less than 500 square feet.

I might be telling a different story if I tried to walk as much as many people routinely do.

I've heard good things about Baclofen/Lioresal though I haven't had any experience with it.

Do you have arthritis too? It can cause lots of problems, and I tend to think that my sudden pain and weakness episodes might be due to arthritis of the knee or hip. Aspirin and exercise seem to help.

[SalpalSally]

Welcome back Gretchen. I've been here for awhile and your name is
familiar to me. Sorry to here you are having a relapse. Other than
Baclofen, some people say that high doses of Magneseum help with
spasms?

I hope this is just a temporary flare for you and will go away soon.

Glad you found us again.

[gdmcor]

Thanks to you three ladies, you are all familiar to me. :)

Sal, Is citrate magnesium the best, or something else?

Agate, I have some arthritis in my neck and a little in my lower back, as shown by x-rays taken the other day. The spasms seem to originate in my hip or left lower back, going down through my legs. They make me draw up in a fetal position almost on my left side. Walking brings them on, and it starts with a tingling kind of weakness feeling in my back/leg area.

Jeanie, I was so sorry to hear about your husband and then your mom. You touching accounts of both were heartbreaking. I hope you are doing better. :)

I'll keep in touch when I can get some help. This is hard on me and my family. My husband works a lot and can't afford to take much time off. My teenage son shouldn't have to go through this, helping mom when he should be having a life. But I can't get much done at this time without knowing what I exactly need, to be more mobile without bringing on an attack.
I hope I can get an app. with a neuro very soon!!

Thanks again, Gretchen

[SalpalSally]

MAG Citrate is fine, for absorption, about 400 or more mg...not mag-oxide.
Also get some MAG oil to put on after shower. I haven't done any of this,
but my spasticity is not that bad.

[Lazarus]

Hi

Before I was diagnosed with MS I had really severe back spasms often. This was 22 years ago. One night it was so bad that my husband took me to an emergency room after I had been on muscle relaxers for a week with no relief. The ER doc gave me a shot of liquid Valium and within 15 minutes the cramping started to go away. Within an hour it had totally stopped.

Ever since then, whenever I have bad muscle cramping, i take a 5mg Valium and the cramping always stops.When my hands cramp I manually straighten them out and that works. When my feet cramp suddenly at a night I get out of bed and stand. That stops feet/leg cramping.

Hope you find relief.

[gdmcor]

Thanks Sally, that's what I needed to know!

Hi Lazarus, Thanks for sharing what helps you with the spasms. I had some Klonopin in the cabinet, similar acting to Valium, and have been taking a small dose of that until I can see a neurologist. I only helps minimally with relaxation, but side effects are not bad.

I'd like to get new sets of MRI's - brain, cervical, thoracic, plus lumbar (which I never had). It's been 5.5 years since I've had any. I feel this will update me on any progression I may be having.

Do any of you get regular MRI's that help tell a story about where you are with your MS? Or do you think they are not necessary after having this disease for a certain amount of time?

Thanks so much to everyone! Gretchen

[Lazarus]

Hi Gretchen,
I get MRIs brain, lumbar, thoracic and...whatever the four is...fairly frequently. I get brain alone sometimes too. Sometimes every six months. Sometimes once a year.
My neurologist said that the. Correlation between progression and lesions is not always strong. I progressed but show few bright lesions anymore.

I use klonopin too and yes, it works on spasms like Valium does for me.

[sakonnet]

Glad to see quinine mentioned. I got in the habit of drinking about a liter of tonic water a day for a while and think I noticed a decrease in spasms in my back and toes at night. Not totally sure if there is a relationship. There were some ads popping up on facebook for a while for a treatment that looked like it was essentially tonic water mixed with robitussin (dxm). It looked a little scammy, though.
I was drinking the tonic water consistently around the same time I was prescribed ativan for anxiety stuff. I casually mentioned an improvement in my spasms to a nurse and she said it might be the ativan. It's the same family as valium and klonopin, but shorter acting and less addictive. The timing of the doses is probably important