Multiple Sclerosis?

[ScooterGranny]

Wondering if any others of you have been diagnosed with Multiple Sclerosis? I was told I had MS about 5 years ago. I was diagnosed with RLS about the same time. I didn't realize, and not sure that my dr realized that there may be a connection. My MS symptoms are not bad, quite managable. The worst is the RLS. There are many nights that I would give almost anything to get a good night sleep. Generally, but not always, mine hits about 30 minutes after going to bed and lasts anywhere from 30 minutes to most of the night. Lately, I have been feeling it more during the day. I am currently on Requip. This is absolutely the pits.

[SquirmingSusan]

Hi ScooterGranny, and welcome to the forum. I can't say that I know of anyone else in this forum who has been diagnosed with MS, but I do that a high percentage of people with MS have RLS. It's a much higher percentage than in the non-MS population. It doesn't work the other way around, though. People with RLS are no more likely to get MS than people without RLS.

And yes, RLS is the pits. So sorry you have to have it in addition to MS. There should be a law against people having to put up with more than one nasty health condition at a time. Does the Requip work for you? It sounds like you're suffering a lot with this and maybe it's not working like it should. There are a lot of medications that are used to treat RLS. You can find out about those in the "New to RLS" section of the message board. Read the sticky post at the top of the section. There are links to all kinds of sites and helpful information. On thing to read is the Mayo Clinic Algorithm for the Treatment of RLS. It details most of the possible medication treatments.

Another thing to ask the doctor about is having your ferritin level checked. Ferritin is the amount of stored iron in the body, and it's a different measurement than hemoglobin. Most doctors will tell you that it's OK if it's above 10 or so, but with RLS it needs to be 50 or more. If it's low you can take iron supplements, or get iron infusions, or sometimes even just eating iron fortified cereal is enough to help.

Best wishes with it and do keep us posted.

[cornelia]

Hi ScooterGranny, there is news about MS and RLS together:

http://msviewsandrelatednews.com/blog5/ ... temid=1129

Corrie

[Hos]

Welcome to the Board. I hope you find relief soon. Does your doctor know how to treat RLS since it's not being treated at the corrent dosage? Does he know? How much are you taking and when of the Requip?

[ScooterGranny]

Thanks for the replies! The RLS seems to have gotten worse recently, but I am reluctant to keep increasing Requip. I was on Sinemet for a while but had some augmentation and I don't want to run out of meds to take! I have also had problems with low B levels as well as folate, so if this spell doesn't ease up soon I may go back and have those levels checked again. Yesterday I took some additional B12 and it seemed to help. Right now I have a nasty summer cold/cough and THAT kept me up most of the night. Anyone notice if your RLS gets worse if you are sick with cold/flu, etc? Enjoy reading the posts very much.

[Hos]

I don't notice any difference in symptoms when I'm feeling bad. FYI: Here's a short list of drugs to stay away from when you have a cold.

http://bb.rls.org/viewtopic.php?p=33045#33045

[Aiken]

Being sick in general doesn't make it worse for me. Having a fever, however, makes it miserable.

[ctravel12]

Hey Hos thanks for posting that. Excellent info to have.

[Michello454]

Wondering if any others of you have been diagnosed with Multiple Sclerosis? I was told I had MS about 5 years ago. I was diagnosed with RLS about the same time. I didn't realize, and not sure that my dr realized that there may be a connection. My MS symptoms are not bad, quite managable. The worst is the RLS. There are many nights that I would give almost anything to get a good night sleep. Generally, but not always, mine hits about 30 minutes after going to bed and lasts anywhere from 30 minutes to most of the night. Lately, I have been feeling it more during the day. I am currently on Requip. This is absolutely the pits.

Hi. I'm new to the boards, but after doing a search on RLS, I was eventually led here. I have multiple sclerosis as well and I was diagnosed a little over a year ago. A couple weeks ago I started feeling this "urge" (no pain or tingling or numbness which is common to MS) to just move my legs and often just my entire lower torso. I notice this when I'm trying to go to sleep and as if my fatigue wasn't bad enough, I'm now beginning to feel a drain from getting less precious sleep. Luckily I get another MRI next month and my Dr. will be looking into these symptoms for me this next coming week.

I had a really hard time finding out information relating MS and RLS, and what I've found is that those with MS are prone to get RLS (NOT vice versa, btw, so no worries).

I just wanted to let you know there was another person out there, somewhere, with similar experiences. Though, RLS isn't the worst for me. I saw another post asking if anyone else has fibromyalgia and I have that too! Curious - Are you taking Avonex or some sort of interferon?

One thing I wanted to mention, which is very likely that you already know, when you get ill, you have a higher chance of relapsing and/or having symptoms increase/flare up. It is very possible, I think, that perhaps if your RLS gets worse when you are ill that it is MS related. I am no Dr., so I could very well be wrong. I'm just trying to help with as much information as I can.

~Michelle

[SquirmingSusan]

Welcome to the board, Michelle, and thanks for posting!

[anniepat]

Hi. I am new to the board-- have had RLS most of my life-- my grandmother also suffered and took many baths, benadryl-- my sisters have RLS and take neurotnin--

I was diagnosed with MS 8 months ago at age of 53. RRMS that has been mild and undetected for many years and I just now have symptoms of right side weakness and balance problems.

Funny- my RLS has always been worse on right side -- arm and leg.

My MS neurologist does not think they are connected but I am not convinced.

I am on Copaxone for MS and Requip for RLS---.75 a day with some breaking through and augmentation now. So...I am thinking of getting off Requip but enjoyed it the first month cause I could sleep. But may not be worth the increasing symptoms.

Anyway, any words of advice and shared experiences would be helpful.

Thanks all.

[ViewsAskew]

Anniepat, one of our longtime members has a sister-in-law with MS, if I remember correctly. I think she may be able to help, but I think she's out of town for a week. I hope she sees this post when she gets back.

[shimjockey]

I too have both, the first was RLS in the early 90's and in 2005 was dx with MS. My neurologist has suggested the MS may have started then and that they are linked together for me.I have used gabapentin and carbidopa/levodopa with some success with the first and terrible results from the last. It actually caused in my mind to make it worse and morph into lower calf cramps. Was going to try mirapex until I read on it's side effects and has not taken it yet. I 'd like to think sometimes the anxiety from wanting to sleep and knowing what usually happens helps it get going, then it does........

[scootermom]

I have had RLS forever, I know now that my dad must have. His leg never stopped moving. I was only dx 3 years ago and I'm on Mirpex. I am going for a spinal tap tuesday to see about MS.

Can anyone tell me the truth about it? Dr told me about it, says it doesn't hurt. I'm a wimp for pain and am scared to death. I don't think she should talk unless she's had one done, which she hasn't because I asked.

[ViewsAskew]

I haven't had one, so can't help you, either. I'm a big pain wimp, too. I suppose you don't have much choice, however, which really isn't fun. I hope it goes well, is pain-free, and all turns out well.