RLS and Neuropathy and/or MS

[mary_kay]

Does anyone know if there is a connection between (restless leg syndrome) and MS?  I have had RLS for years and in the last few months it has gotten much worse.  I take Mirapex, which has worked really well, but now I guess I need more of it because it really flares up every evening (all over my body) before it is time to take my meds.  I feel like I am falling apart!  Numb hands and feet...apnea....RLS...blurry left eye....FATIGUE.....Sorry, I think I am having a pity party.   Thanks to all for being there!    
Mary Kay

[Quixotic1]

RLS often affects the arms, too.  Many neuros refer to it as Restless Limb Syndrome.

Q

[Fluffysmom]

I've had RLS for many years.  I was tried on a few anti-Parkinsonian drugs, but they made me dizzy and wobbly.  I did a little research, and asked my PCP if I could try Neurontin, which worked like a dream.  

When the symptoms got worse, my PCP checked my ferritin level; apparently people with RLS need a higher level, and mine was low by any standard.  I took supplements, and that helped.

When I started feeling the RLS feeling in my arms and other areas, my PCP had me take a low dose of Neurontin twice a day, as well as a much larger dose close to bedtime.  Worked like a charm.

Last year I switched to Lyrica, and just take 50 mg. three times a day.  That's my story.

Oh, except for the part where I am being tested for MS because of brain lesions and weird symptoms.  I can see a connection in me; more neurological symptoms.

Good luck,

Kathy

[Quixotic1]

Just a quickie before we leave to celebrate my Dad's 84th B'Day.  Yes, RLS is more common in people with MS than in the general population.  My old, evil neuro missed that clue and my new MS specialist picked up on it immediately.

Later, gators

Quix

[6-paq]

A VNG is testing that uses a set of goggles to measure your eye movements during a series of tests.

There are 4 parts to the test.   Depending on how your eyes react during these tests can determine if your dizziness is caused by CNS (central nervous system) or peripheral (inner ear) issues.

Someone with MS who has dizziness caused by a lesion would show discrepancies caused by the CNS.

Hope that helps!

Take care, Pat :)

[mary_kay]

Mirapex works really well for me.  I just need more right now and have put in a call to my NP.  What's a VNG test?

[mary_kay]

Dearest Jo, Heather, Pat, and Mercy,   Thanks you so much for your warm welcome and support. It is wonderful!  I have had an MRI (cervical and lumbar) already because my NP thought I might have the neuropathy due to stenosis in my neck and lower back. All the report said was that my disks did not appear to be the cause...My sense of the possibility of MS is due to my own research about the disease.  No doctor has mentioned it to me yet.  I think the neurologist will probably bring it up when she rules out diabetes.  I have absolutely no symptoms of diabetes except for blood sugar that runs a little high when I am tested. I have had numb feet a lot longer than I have had borderline blood sugar problems.  The thing is, I am so much worse now than when I went to the doctor.  Since I first brought it up to my NP, I have started dropping things, bumping into things, blurry left eye, occasionally finding it hard to find words....I'm not sure I even trust myself sometimes about this stuff.
Thanks for being out there.
Hugs, Mary Kay

[mercyone]

I heard that MS and Resltess leg Syndrome can be connected also - my legs give me fits at nights and something that needs to be addressed at my next appt.

I know about falling apart - seems that it catches us unaware at times. I've taken to riding my bike which really helps my attitude - I ride at lunchtime at work - and almost feel normal - well maybe even better than normal for a little while at least.

Good luck and keep us posted.

Mercy

[6-paq]

Welcome to the forum!  Glad you found us!  :-)  

You've gotten good advice from Heather and Jo, but I just wanted to say "Hi".   I really can't give you any advice about the RLS/MS connection.   My father had RLS, but did not have MS.  He passed back in 1985 and I don't believe he was given meds for his RLS at that time.

If you are having dizziness and feel off-balance, I agree with Jo and try to get a VNG.  That will help pinpoint the cause of your dizziness.

Yeah, I can definitely relate to the "fall apart" comment!  

Welcome again and am looking forward to hearing more from you!

Take care, Pat :)

[Heather3418]

Hi Mary Kay.  Welcome to the MS Forum.

I have had Restless Leg Syndrome for over 15 years. I also have MS.  I understand that as we age, RLS gets worse.  It also tends to run in families.  Doctor's are not really sure what causes RLS.  I have used various medications over the years to help control it.  Requip, Valium and now Klonopin.  The Requip made me sick, the Valium did nothing, the Klonopin used to work great and now has not affect at all.

I even have the restless feelings in my arms now.  It's abolutely awful.  My Neurologist says that the majority of patients that she sees with MS do complain about having RLS.  RLS is also seen in the population without any other Neurological problems.

I had heard that Mirapex had come on the market, but understand that it has the same chemical properties as Requip (a drug for Parkinson's disease) so I don't believe that it will work for me.  I will be tapering off Klonopin, since there is no use taking a drug that doesn't help anymore.  I am literally at my wits end about how to control this very unpleasant feeling.  It sure interferes with my sleep.

Neurologists assume that RLS is like minature muscle seizures of sorts and that's why they try drugs used for Parkinson's disease.  I will be seeing my Neurologist in August and we are going to talk about another kind of treatment then.  If you find something that works, please let me know.  I share your discomfort.

I am so glad you posted and hope that you will stick with us.  Again welcome to the greatest group on the Internet today.  You will soon see what I mean.  These are truly great people on this Forum that CARE.  Sometimes more about others, than they do themselves.  A very giving and loving group.  I'm proud to call them all my friends.

Best Wishes and please keep us informed about the RLS.  I am desparate to find relief.

Heather
Old Veteran Member of the Forum

[cjacks]

Mary Kay

Welcome       You have found us at last . We've been waiting for you ! :)

Good luck with the testing ,  any mention of an MRI yet ?   Were you seeing a neuro for the RLS?  Why has it taken them so long to start testing ?    I am sooo nosy!!   Did you tell him/her about the RLS getting worse ....  and are you upping the Mirapex?   My Mother has been on it for two years , after suffering for decades, its the wonder drug..

There are a couple of members who have both MS and RLS  ..Heather and I think Mcbcon...  
Heather can tell you much about the subject, she has tons of info ,

Did you say somewhere that you are dizzy and off balance ? ( or was that me :)   )    I can't remember where I read that or who ,  so please forgive if it wasn't you. :)
My doc started taking me very seriously after I had a VNG test , for balance and dizziness . It showed I had abnormalities ....  yippee ,   So that another good one ..

Did you find the health pages , upper right of the page....  

Stay with us , we'll help you through the process.     If not for this place I'd still be fumbling around ..  as it is I've gone through three neuros , but have a component one now and a great MS specialist.   I'm , hopefully , just a short distance from dx.

We all understand about being afraid of being perceived as a hypochondriac , we've all been there. You will get support and understanding  here

Its good to meet you .  
Take care .

Jo

[SwanSong]

This was just on the news in my area, Pacific Northwest, that RLS is connected to MS. Not all cases are, but there is a connection for some people.

Do a search with RLS and MS in it and I'm sure you'll find the news article.