Newly Diagnosed w/RLS

[prippy]

I originally went to my doctor because what I described as achey and shooting pains in my legs. I had some blood tests run and my doctor ruled out a few other things. He gave me the beginner pack of Miracet but wanted me to try Tonic Water first. I tried it for 2 weeks with no results. This past weekend I went on my usual 3 mile walk, but I worked out pretty hard and felt great afterwards. About 2 hours later, my legs began to ache something terrible. I've been eating Advil which seems to help. I called my doctor today and told him I wanted to start the Miracet.

My question is do my symptoms sound like RLS? I question whether it really is but I just want some relief. Thanks.

[Sojourner]

Prippy,

From your brief discription, it may not be possible to rule out RLS, but, in my opinion, your symptoms do not seem to contain the major components associated with RLS. Briefly, RLS is associated with uncomfortable sensation in the legs with a clear need or urge to move the legs. The symptoms are worse at night or when resting. And, the symptoms are relieved with movement. Unless I missed something, your symptoms do not sound anything like this. Do they? If not, you probably do not have RLS. if you have not already done so, I would urge you to read the "sticky" Managing your RLS."

I'm guessing you mean Mirapex, a common medication prescribed for RLS. Although, you would desperately like to find some relief, I think it might be prudent to obtain a definite diagnosis or be reasonably certain you have RLS before starting Mirapex--or any medication for that matter. Is it possible your symptoms are due to excercising too rigorously or some other excercise related injury?

Again, and although I am not a doctor, my two cents is that your symptom presentation does not appear to be classic RLS and further exploration of alternate diagnoses would be reasonable before starting the Mirapex. You may wish to copy some of the information at the Mangaging Your RLS thread and take it to your doctor. I'm sure others may have additional advice.

Just a sidebar, if you read this soon, many members will be at the rls.org chat room (Restless Leg Syndrome Foundation) shortly and you can ask additional "real time" questions if you like. Go to the rls.org site and click on the link to the chat room. Enter a name and away you go. For most it works easily but as usual some experience difficulty logging on. In any event, WELCOME and glad you found us. Lots of good people and information here. Best wishes.

[ctravel12]

Hi Prippy and welcome to this group. Mark gave you some excellent advise and definitely read the thread on this forum "Managing RLS" as Mayo Clinic Algorithm has an excellent article. It may answer some of your questions.

Tonic water is usually for leg cramps which is not rls. I hope for your sake you do not have rls. It would also be worth your while to print out the Mayo clinic Algorithm and bring it to your dr.

Please keep us posted on how you are doing.

[blryan]

I just want to add my 2 cents. Those are the exact symptoms I had a year ago. After exhaustive tests (MRI's of neck and spine, plus x-rays) and about 25 blood tests, they eventually diagnosed it as RLS.

I no longer have the shooting pains, but still my legs ache at night sometimes. I take Requip and have been able to decrease the dose this year to just .5mg at night.

One of the questions the neurologist asked me was do I constantly feel the need to stretch out my back or legs, which my answer was a resounding YES! Mine did get better with movement, but after awhile with no sleep, moving didn't help because by then my legs were so tired and sore, they still hurt even moving around. He put me on Requip with a wait and see attitude. He said if this helps, it will tell me that you have RLS. If it doesn't help, then we're back to square one. Well it did help so I've been able to decrease the Requip from a high of 3mg to just .5 now.

In my case, exercise helps me quite a bit. When I don't go to the gym, my RLS is much worse.

Barb

[prippy]

Thanks for all the replies I've received. It has been very helpful.

I spent alot of time today on the internet researching RLs and trying to find an RLS specialist in my area. I looked on the RLS Foundation's website and the only doctor listed that is in my area is a doctor that specializes in sleep disorders. I was wondering if a sleep disorder doctor is the type I need to see for a second opinion? If not, what type of specialist should I see? Neurologist? Internist?

This is probably a BIG stretch, but I was wondering if anyone knows if there has ever been an RLS connection/relation to Multiple Sclerosis? My daughter was diagnosed with MS 3 years ago when she was 21. Could there be some sort of genetic thing going on here?

Thanks again.

[Sojourner]

Prippy, I applaud your research undertakings. Knowledge is your best ally. In terms of an RLS provider, I'm not sure the title is as important as finding someone with a knowledge about rls and its treatment. Someone familiar with the Mayo Clinic Algorithm is a plus. Equally, as important, is finding a provider who is willing to partner with you in treatment. If the provider you find is not an "RLS specialist" but is willing to listen to you and learn with you--or from you--that can also be a good marriage. I think you will find that many here receive treatment from a variety of disciplines including neurologists, sleep disorder specialists, etc. with varying degress of satisfaction. Some providers are reluctant to prescribe narcotic medications and that is a common reason for people changing providers to someone willing to prescribe a "wider" variety of medications. Changing providers over the course of time is not unusual. We are always searching for that special someone. My initial provider was a neurologist but I now am cared for by a sleep specialist. If you do not have a "specialist" in your area ask questions about those you are considering i.e. Are they familiar with RLS, How many patients with RLS have they treated, Are they familiar with the Algorithm etc. Based on their responses you likely with find someone in whom you can have some degree of confidence.

I do not know where you are located but some of the larger universities have an "RLS Clinic." If you are near Michigan the University of Michigan in Ann Arbor has one.

Out of my comfort zone a bit with respect to the MS/RLS connection. I do know there is research indicating that MS sufferers have a a higher likelihood of developing RLS. I do not believe there is any research that says RLS causes MS--more than occurs in the "normal" population. It is not uncommon for RLS to run if families and I believe research suggests a hereditary/genetic link. From Dr. Buchfuhrer's et al. book: "Studies have found that 60 percents of people with RLS have a positive family history, with at least one first degree relative affected with the disorder." Others more closer to the MS issue can probably give you more solid information.

You may want to obtain a copy of the book Restless Legs Syndrome by Mark J. Buchfuhrer, MD, Wayne A. Hening, MD, Ph.D.. and Clete A. Kushida, MD, Ph.D.. You will find it at Amazon and many book stores. It is often referenced here and may be the best book currently available on the topic. Curiously, or not, I did not find Multiple Sclerosis listed in the Index.

[mackjergens]

Prippy,
I am wondering if you might have PLMD (Period limb movement disorder) simpy put this means your legs/arms will jump/jerk while you are sleeping. IF you have alot of constant movement of limbs during the night, first you will not get the deep sleep.leaving you very tired feeling each morning, plus it could be causing the pain you are feeling. To find out about PLMD you can have a sleep study done, which will tell you IF you have PLMD and exactly how many times a night your limb movements are happening.

I am certainly not an expert on rls or a Dr, but according to the RLS info that I have read, if you do not have the creepy crawlie feelings in legs, that keep you up and walking, then you would not have RLS. You can certainly have pain with rls, but as I said the RLS info states without the strange feelings, its normally not rls. PLEASE read as much about rls as possible, also there are other movement disorders that are similar to rls, and you can read about those on www.wemove.org I would read thru those just to see if anything clicks with you and your problems.

I do not think I would just accept the DR saying its RLS, without having test done, there are so many other movement disorders that might cause you great harm if ignored. RLS is absolutely madding to live with, but it is not something that will cause you to lose a leg or etc. So I always get alarmed when a DR just tosses out RLS without ruling out other problems.

Just keep reading and educating yourself. You might just type in your symptoms into google search engine and see what pops up, then follow the links and see if you come across something that matches what you are going thru!

Good luck and keep us posted.

[KBear]

. . . if you do not have the creepy crawlie feelings in legs, that keep you up and walking, then you would not have RLS.

I do not agree with this statement there are many of us who would not describe the feeling in our legs as "creepy crawly". The most distinctive feature of RLS is the controllable urge to MOVE that is brought on by sensations in the legs that people describe in many different ways.

The description that Barb provided more closely matches what I experience:

One of the questions the neurologist asked me was do I constantly feel the need to stretch out my back or legs, which my answer was a resounding YES! Mine did get better with movement, but after awhile with no sleep, moving didn't help because by then my legs were so tired and sore, they still hurt even moving around.

The point is that each of us experience the sensations differently, the one thing that is universal is the need to move.

[mackjergens]

I stand corrected, there are many ways to describe the feelings of rls! But the main description is the need to move or stretch, for so many of us its the need or the have to get up and move, I know that there is NO way I can remain in bed just stretching my legs when I am having a major rls attack, I absolutely have to get up and walk, finding something to do to keep moving on my legs.

I also know there are many different degrees of RLS, I have heard many say theirs is very lite, so they can just stretch their legs without having to get up, but I think I am correct in saying that for most all RLSer's the loss of sleep due to the feelings within our legs is a major way of knowing its RLS!

I guess I should go back and re read all the rls info, I was sure that it stated that if you only had leg pain and not the unusal feelings to where you had to move/stretch it would not be rls?
I will once again read the rls info and post my findings, because I am certainly NOT an RLS specialist nor a Dr.

Sorry for the mistake in my posting of just calling it creepy crawlies. I know there is one web site that has a very long list of different things people refer as to what their rls feels like.

[ViewsAskew]

I once asked Dr Buchfurer and Dr Rye about this at one of the RLS conferences. The following is what I remember them saying.

Of the four criteria, the one that is the least important or can even sometimes be incorrect, is the one about the sensations. First, the sensations are "interpreted" many ways. They said that in a few patients, that there were NO sensations at all. Dr Rye talked about one patient he had who absolutely had no sensation - he just HAD to move. Most of us have sensations of some type, though - the best way I can think of to explain them is that they are uncomfortable - all of us would agree with that, regardless of whether they are creepy, electrical, pulling, etc.

To them, what was critical is that the person just HAS to move and that moving makes it better. If moving does not help, or if you only move for other reasons than being COMPELLED, then it's not RLS.

They did feel the other two criteria were also important, but that feeling compelled to move was the most definitive of the 4 criteria.

[Sojourner]

Just kinda wondering here. Seems to me that, in the world in general, once something is specificlly defined through the years that definition often tends to become broadened, expanded, or the criteria becomes more diffuse. I wonder if there is a "Murph's Law" equivalent for this. This phenomenon (my words) may be a function of enhanced knowledge, the desire to include more people to fit a certain definition, intially poorly defined parameters, etc.

Could this be the case with RLS. As more become known about RLS, as more research becomes available, as it becomes a more publically appreciated disorder etc., I'm wondering if the criteria or the defining aspects of the criteria are being expanded. Is it sensations or pain (and I guess pain is a sensation); Is it stretching or movement (and I guess stretching is movement). So, as I look at what constitutes RLS, and PLMD for that matter, as more people describe it as various things then the defining characteristics or examples of the defining characteristics seem to encompass more and are less ridgid, more flexible, or perhaps even a bit blurred. And then when things get way out of hand the pendulum swings back and there is the opposite reaction of trying to rein things in again.

H..l, I don't know what I just said and if anyone does please explain it to me. The only excuse I have is that I am a bit sleep deprived and have too many hours on my mind.

[ViewsAskew]

I'd be happy to tell you what you said if you can tell me what I say, lol.

I do think you have a point - over time, we do know more and the definitions are changed to fit more people. I don't think, as of now, that anything we know removes or adds an essential criterion, but that the way we interpret each of the 4 is expanded.

If you put in RLS criteria in a search engine and read them, many of these have been modified - they clearly say that you don't have to have sensations, for example, that the sensations can be anywhere, etc.

I just wish that those who need it - diganosing doctors - were aware of this...

[mackjergens]

Mark,
I think I understand what you are saying and I think I even agree with you..*L*

What always scares me is that a Dr will tell someone its RLS, and even treat it as that, only to find out much later that its something else. While RLS is absolutely horrid to live with, you are not going to lose a limb over rls, while if a misdiagnosis of something like poor circulation or possibly a tumor in a leg that is causing pain or any number of things,that could be causing painful legs and could cause a loss of limb.

Yes many people with RLS have pain, and I understand that, but if one is only having pain, they should certainly go thru all the testing just to make sure its not something beside RLS.