Multiple Sclerosis Patients at risk for having Restless Leg Syndrome

I didn't have any problem with RLS as a kid, but I have had a couple of episodes that sounds like RLS recently. About 1/2 hour after going to bed I had the feeling of something sharp poking me in the shin. It felt like a staple or something was in the bedsheets, kind of a cross between a pain and a real bad itch. It made my whole leg jump and twitch like crazy. I had two episodes that night and another about a week later. Nothing since.

 

I doubt there's a connection, but I had a lot of leg pain as a kid. I went through a huge growth spurt and I think the pain was related to that. I was 5'-2" when I was 10 years old, 6' when I was 12 years, and 6'-2" when I was 14. Looking back, I think I may have had some early signs of neurological problems around the age of 13 or 14.

Hi Merely,

Girl, did you touch on a subject that I feel I am a tiny bit of an expert in.  I wrote about this a few weeks ago, but I would like to comment on this once again.

 

I was diagnosed with RLS a few years ago, after 20 or more years of painful legs and lots of sleepless nights.  My husband sometimes will massage my legs when they are at their worst and the harder he massaged my legs the better it was.  I am, and have been for a few years, on Mirapex (.5 in the a.m. and .5x2 in the p.m.).  I take it at 6:00 in the morning and ~ 6:00 in the evening.  However, if I forget the nighttime dose, or if I am 1-2 hours late, then I suffer.  The medicine takes at least an hour to get into your system.  BUT, it works.  I tried other medicines and nothing works better than Mirapex.  I'm not trying to sell this medicine, but to educate others with RLS or possible RLS that this medicine works for me and may work for others.

 

Anyway, I am in limbo with possible to probable MS.  And I have to wonder if my RLS is a symptom of MS since I was a teenage.  I appreciate your research on the link between RLS and MS and I will look further into this also.  Smiling, Linda

Good morning from Israel ,

 

Me, you really hit on a sore spot for me. I remember having sleep problems from about age 7. I had this twitchiness in my BACK and legs that made it hard for me to get to sleep.

 

I was dx with MS + FMS in 10/98. One of the first complaints to my neuro was that I hadn't had a normal night's sleep in over 6 years because of twitchy legs and toes. He immediately gave me meds to help deal with that and said that without sleep my body and mind couldn't deal with my sx (extreme pain 24/7, early brain fog, anxiety attacks).

 

As time moved on I started having periodic attacks of twitch in my back, arms and legs that exhausted me and left me frustrated and screaming. I still get them once in a while, but since I started Lyrica 1 1/2 yrs ago it's been significantly less. My toes still work overtime .

 

RLS became R BODY S for me. When it happens, it's one of my worst sx. I wouldn't wish it on anyone.

 

Feel good  and sleep well!

 

Maris

 

 

I started having sensations of needing to stretch my legs or exercise. A month later I had optic neruitis. I was diagnosed with MS after all of the MRIs showed lesions. The need to stretch continued to get more often. My leg started jerking so much at night that it kept my husband awake, as well as myself. The doctor prescribed Mirapex. It has alleviated the symptoms. My only concern is that over a period of 5 years, I have gone from one to 3 or 4 Mirapex tablets a day.

I have had RLS since I was a teenager.  My pediatrician called it leg ache.  She would have me elivate my feet and take two asprin.  This usually worked.  You are right streching does seem to help.  It is not unusual for me to stand from 9pm till bedtime.  I was diagnosed with MS in 2002.  I have had RLS since the 1970's.

I'm not sure yet if I have MS, the doctor is still working on that, he does know that I have an immune diffenancy.  My family doctor GP did say that I have RLS some time ago maybe 5 years ago or so.  As a child my legs did hurt, as far as I remember the doctor never gave my mother a reason except growing pains.

YES, I have it,started about 4 years ago,before I even thought of this,4:00 am is when it usually stops,then I can sleep, the Avonex does help about 3 days of the week,then when I get close to my shot it starts again.

My feet/calfs (right side worse) are solid all the time,when I spasm they jump.

So if I get to sleep I wake right up.

There are drugs to relax me enough,but you can't walk on them.

It has been almost 8 years since I have had a decent night of sleep (decent) meaning2 to 3 hours or better.

  Every evening whether im sitting in my recliner or laying in bed my legs will just jerk or twitch usually starts off twitching sometimes it feels like it is coming from my knees sometimes my ankles. There are times when I just wish I could cut my legs off so I can go to sleep, I was so fed up with it that one night I asked my son for a couple of tokes of his pot because I know it relaxes him well guess what I was able to go to sleep in like 15 minutes of smoking that stuff so I tried it a few more times and it worked but quite doing it because of my job as a Supervisor and sometimes random testing.I have no idea what I have as to MS or RLS because I dont go to doctors.

 

I have had restless legs for as long as I can remember.  I would spend most nights kicking my legs until I finally fell asleep.  When talking to one of my clients, she described having exactly what I had been experiencing.  I was referred to a sleep clinic and low and behold, the results came back that all these years I have had RLS. I was given Clonazapam and Leva-dopa and it helped almost immediately. Meds don't work as well now and I am also experiencing similar issues in my arms.  No wonder it takes so long to get a diagnosis of MS if you have been having symptoms from such an early age but, certainly when I  was a kid, no one would have associated my leg quicking to MS.  I was just told to stop.  Like you can turn it off!!

As with the diagnosis of MS, I was relieved that I wasn't going crazy, there really is a name to the symptoms.  During my sleep study, I never did reach the REM stage of sleep(most restorative part of sleep) and I also at one kicked my legs 61 times in an hour!!

I have been diagnosed with onset to MS. But as a child I do suffer with RLS as well. My mom and sisters, and brothers all have RLS also, and are on medication for it. I refuse to be on the medication, when I find that Childrens Dimatap works for me. If I feel the urge of the RLS coming on before bedtime, I will take some dimatap, and it puts me right to sleep, and then I am not bothered with it. I dont know what is in the dimatap that relieves the RLS, but as long as it is working for me, I will keep doing that.

Hi all,

I had RLS for about 6 years prior to my dx with MS + FMS. When I got together with my neuro for the first time I told him that I hadn't had a normal night's sleep in all that time. The immediate actions we had to do were the 4 days of drip-Solumedrol, easing my pain, and getting me to sleep.

 

I was happy about that. I was really exhausted. We started on all kinds of treatments for my sx and 2 1/2 months later I started on Copaxone.

 

The rest of the story in unnecessary now, but that wasn't the end of my RLS. Over the years I had to increase meds to minimize it. Then I started getting attacks of RLS, but in my arms, legs, back. I think that was worse than attacks of MSHug and TN. They really drove me close to ending it ALL ! Somehow those attacks also became much less frequent. Now my twitchy-toes drive my DH crazy when we're relaxing on the couch.

 

I think RLS is one of the most frustrating, agrivating, infuriating sx that we can get.

 

Good luck and feel good.

 

Soothing hugs ,

Maris