RLS to Parkinsons?: Is there any... - Restless Legs Syn...

Restless Legs Syndrome

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RLS to Parkinsons?

Hopeless100 profile image
56 Replies

Is there any statistics on the likelihood or RLS being a portend or pre-cursor of Parkinson's or anything like that?

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Hopeless100 profile image
Hopeless100
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56 Replies

People who have Parkinson's can develope RLS, but not the other way round.

Jaynielynne profile image
Jaynielynne in reply to

It usually goes Parkinson's, then RLS...but there are always exceptions according to the physician's guide to RLS. I did ask my doctor.

nightdancer profile image
nightdancer in reply toJaynielynne

Do you mean the PDR or another one? (Physician's Desk Reference)

Jaynielynne profile image
Jaynielynne in reply tonightdancer

My doctor has a book on RLS. It has basically all of the same information that I found on the treatment page at rlshelp.org. I asked the same question as Hopeless100 did and he knew that answer, then showed me that there is no association with RLS progressing to Parkinson's but sometimes Parkinson's patients also have RLS. Does that make sense? I am not sure of the title of the book.Im scheduled in for a procedure next week Tuesday so I will check on the name of the book. The book doesn't have just RLS. It has other sleep issues. He used the PDR to answer other questions related to rls.

Avosyl profile image
Avosyl

Sorry to disagree Elisse but my father had RLS for years but only in his last couple of years developed Parkinson's.

eileen49 profile image
eileen49

They are both related to lack of Dopamine - you either get one or the other

in reply toeileen49

No, RLS is not due to a lack of Dopamine! The scientist believe that we have problems to transport the dopamine all the way to the basal ganglia area, but we have enough of it and that is why we gets side effects and augmentation from dopaminagonists.

gypsy49 profile image
gypsy49 in reply to

That actually makes sense to me knowing how I was with meds but then saying that I still believe we're all different as we all seem to react differently to what ever meds we have

in reply togypsy49

Yes, RLS is a syndrome, not one singel disease and that is way it is so different for all of us.

nightdancer profile image
nightdancer in reply to

I hate to say it, but officially RLS is a disease now, as in the also known as WED or Willis Ekbom Disease, the and classification of it as a disease happened year. RLS is just easier to keep using it for most of us, since we have done so much RLS awareness work. That is what most people know it as, so a new name is very confusing, but true. I never use WED, because hardly anyone knows what it is. The US RLS Foundation is actually the WED Foundation, (doing business as).

in reply tonightdancer

Yes, I know. We in Sweden has taken the new name, but most people ( including me) now call it RLS/WED instead. And in fact it is just a name shift, the Monster is the same and all the sympthos are still very different, it is still a syndrome. There are scientists that says that RLS/WED must be quite a few different diseases and in the future we will have enough of knowledge to sort them out and then it will be easier to find some kind of cure for some of them. Let's hope that they are on the right way.

nightdancer profile image
nightdancer in reply toeileen49

Parkinson's has one big difference, iron or ferritin levels have only to do with RLS, so it is not always a lack of dopamine, hence why the meds do not work for everyone, and why it is all so confusing to figure out. The specialists cannot figure it out yet , so we just have to talk it out and get ideas out there at least. ;)

in reply tonightdancer

You can have perfect levels of dopamine, magnesium, iron, serum ferritin, vitamin B 12 and still suffer from severe RLS/WED, ask me!

nightdancer profile image
nightdancer in reply to

same here

Avosyl, I agree with you, my father had the same: for years RLS and later in his life Parkinson.

I maintain what i said, because you have RLS you will not develope Parkinson's. There is no evidence that points to this. If the people who have RLS and have developed Parkinson's then they were unfortunate for that to happen, but they didnt develope Parkinson's because they had RLS. Put in the search box on here....RLS and Parkinson's and you will get other posts which say the same. Both conditions are different, even tho people with Parkinson's can develope RLS. If anyone has the evidence then i would like to see it. Because i cant find anything which says it. :)

gypsy49 profile image
gypsy49

Makes me wonder if RLS is just a different form of Parkinson's just not as bad

Avosyl profile image
Avosyl in reply togypsy49

As far as I can make out RLS is part of the same family.

gypsy49 profile image
gypsy49 in reply toAvosyl

thats what id have though just a different strain ....

nightdancer profile image
nightdancer in reply togypsy49

Just because the same meds are used for both does not mean that they are related and recent studies as of 2015 NOW say that people with PD develop "restlessness" which is caused by PD< but NOT RLS. They are backing way off of the idea that RLS can be caused by Parkinson's. Even the experts got confused on that one. They are saying it is restlessness, not RLS. and RLS can NOT, and never has been a condition that can "cause" Parkinson's. I took care of my father for 13 yrs after his stroke and then he developed PD, then Alzheimer's, Dementia. he is the ONLY one in my family that did not have RLS. The entire rest of my family (sisters, nieces, mother, and my niece's kids all have RLS and PLMD) But the latest studies show that RLS cannot "morph" into PD. IT was a theory and nothing more.

gypsy49 profile image
gypsy49 in reply tonightdancer

wow a year later ... lol think we all have our way of thinking things through even our own neuro dr's mine test me each time i go for PD make me wonder why ,

nightdancer profile image
nightdancer in reply togypsy49

I know a year later! lol But it is a bigger subject of studies now, finally! I would dare to humbly suggest that while it is a good thing to be tested for PD, if your doctor is running these tests simply because you have RLS, then he is doing it for all the wrong reasons. I will add that my father was diagnosed with PD about 4 months before he died. He also had Alzheimer's, was bipolar and had a stroke under anesthesia that brought him to his knees. BUT, his PD diagnosis came waaaaaaay too late no matter how much noise I and my mother made. After his 3rd heart attack, MY neurologist went to the local hospital at my request ( she is an angel) and she was the one who diagnosed him. NONE of HIS doctors ever paid attention to family wishes hen it came to that, so I called in my own doctor. ;)

gypsy49 profile image
gypsy49 in reply tonightdancer

uh-huh....

nightdancer profile image
nightdancer in reply togypsy49

?

toolcreep profile image
toolcreep

In my research, everything has said that having RLS does not mean that you will develop Parkinson's Disease, but that it is possible to have both in no particular order of occurrence.

nightdancer profile image
nightdancer in reply totoolcreep

Totally agree, and would like this thread to get back to relevant, daily discussions, because the issue is bigger than ever right now, and it is completely relevant to current discussions going on at every PD/RLS research facilities at the big centers like the Mayo Clinic.

spike28 profile image
spike28

good comment Toolcreep, totally agree with that comment

Carol456 profile image
Carol456

I agree with toolcreep also, i dont think you can make a blanket statement like that, we could develop parkinson's just the same as anyone else, rls does not preclude us from getting parkinson's, so i would disagree with Elisse's comment

Jaynielynne profile image
Jaynielynne in reply toCarol456

Carol, I think that Elisse said what you did? At least that's the way that I read it. I have foggy brain sometimes.

Carol456 profile image
Carol456 in reply toJaynielynne

no, dont think so

Exactly what i said...! You do not develop Parkinson's because you have RLS.

spike28 profile image
spike28 in reply to

that is NOT what we said, we said you may still get parkinson's disease if you have rls, as it does not prevent you from getting it.

Pete-1 profile image
Pete-1

eileen49, Or both.

nightdancer profile image
nightdancer

People can have BOTH, or have comorbid conditions. You can have RLS and cancer at the same time, but they are not related. You can have RLS your entire life and develop Parkinson's later in life. But, the scientific information that is credible says they are both neurological conditions, but separate. Just because the same meds are used sometimes does not mean the two diseases are connected. But, as of now, there is no evidence of RLSer's developing PD because of RLS. My whole family has RLS, but father did develop Parkinson's in his late 70's. He was the only one in the family without RLS, by the way. I know it can be confusing, but there is no connection as of now. It is possible to have more than one thing wrong with you at the same time, I'm just saying, or to develop other things that are not related. I have developed many things that are neurological/pain issues, and I know they are not related, just have more than one thing at once. But, RL does not lead to Parkinson's. Check out the International RLS Study Group (expert study group), the UK Foundation and the RLS Foundation in USA.

nightdancer profile image
nightdancer

Exactly what Elisse said, too. You and she and I are all saying the same thing. LOL It I possible to have both, but RLS does not lead to PD. Elderly PD patients do seem to develop RLS more as they get older, which seems weird, since they are already on Parkinson's meds, but the ones they are taking do not seem to stop the small percentage them that do happen to develop RLS, as they get older, maybe the PD meds stop them from developing the symptoms earlier in life, and now as the patients age, the RLS ramps up and breaks through.....just thinking out loud. But, most PD patients are on dopamine meds already before they start feeling the RLS. Something to think about anyway. All I know we can have dozens of things wrong with us at the same time, and a huge study would be needed to be done with PD patients (one has been done that followed them for over 10 yrs) non PD patients, and focus on when ad how sever the RLS is when it starts up. Then you would have to divide up the dopamine taking PD patients from the no dopamine ones to be accurate, and have a large amount of people. Someone in a other group cited a study to me about something else yesterday, but it was a 10 person study. That is a "practice" study and something like that is interesting, but we need the big, long studies or we will never get any further (brings up other issues) with RLS.

gypsy49 profile image
gypsy49 in reply tonightdancer

Which is why more research need to be done I still believe RLS is another form of PD who knows ... We could all go round in circles till the cows come home because non of us are actually sure what's what not even the experts , I look at it this way there's many forms of flu and other illnesses so why not PD,

Jaynielynne profile image
Jaynielynne in reply togypsy49

There's no cure for Cancer either, but it gets researched, they might find some ways to make having cancer more tolerable during the brutal treatments of chemo. The same is true for other

diseases so I hope that someday we find something that will help the legs stay comfortable even if it is not a cure. You are right though, seems like not enough research is happening to help us faster.

spike28 profile image
spike28

totally pointless to say anything really as people will always disagree, they have a fixed idea in their head, and will not allow other's a voice !!

gypsy49 profile image
gypsy49

No ones right no ones wrong because no one knows...

nightdancer profile image
nightdancer

here is the most scientific explanation of what this thread is about. I know lots of people from here quote from here, so let me give you the site. It goes deep to the differences between RLS and PD what some people think and what the science shows. It is a neutral site, and the foundations do depend on their research and studies that they do. They get special grants to research RLS. So, it shows all sides of it. Hope this helps everyone. ;) have a good one!

nightdancer profile image
nightdancer

Forgot to add the link.... ncbi.nlm.nih.gov/pmc3514082 oops! sorry! ;)

in reply tonightdancer

Not working..lol.

gypsy49 profile image
gypsy49 in reply tonightdancer

Could be all them .... You put after that stopped it working

spike28 profile image
spike28 in reply tonightdancer

hmm ,

nightdancer profile image
nightdancer in reply tospike28

sorry! It worked on 4 other sites like that. Anyway, let me quote from a different web site remarks and observations by Dr. Steven Poceta,. MD, RLS researcher and Parkinson's. "Because of some RLS is well treated by dopamine meds, also used to treat PD, it is likely that some aspect of brain dopamine function is affected by the MEDS. However, unlike in Parkinson's, in which the substantia nigra dopamine producing cells can be proven in many ways, and no such abnormality occurs in RLS." So, that is part of it, there is brain damage that shows up with Parkinson's that does NOT show up in RLS. youngparkinsons.org His article is simply titled "Restless Legs Syndrome and Parkinson's Disease." There is a physical difference that shows brain damage to Parkinson's and Alzheimer's patients that simply does not occur in RLS. I have seen many brain scans for PD and Alzheimer's, my father had both, but he had no RLS. so, there is an actual physical difference that shows up in brain scans between PD and RLS. There is a difference between the symptoms of RLS, and just "restlessness" that comes with PD. That's all I know. ;) Google the good doctor's name. He has done a ton of research.

spike28 profile image
spike28 in reply tonightdancer

4 OTHER SITE'S ??

nightdancer profile image
nightdancer in reply tospike28

I post to more than one group a day is what I meant. ;)

gypsy49 profile image
gypsy49 in reply tonightdancer

As I said I wondered if RLS is another type of PD don't think anyone can know for sure just as there's different strains of flu and other diseases not that I'm comparing flu to RLS or PD just an example

Pete-1 profile image
Pete-1 in reply tonightdancer

Not working for me either.

Rubylane25 profile image
Rubylane25

Mydoctor toldme thateven tho it stems from the same part of the brain Rls does not turn into Parkinson. They are definitely not related.

spike28 profile image
spike28

I do not see how anyone on here can say a definate yes or no, after all NONE of us are expert's in any field, not unless you count suffering from PD or RLS, stress on the S as it is a syndrome

Hopeless100 profile image
Hopeless100

Many thanks for the replies here, I think the consensus is that there is no direct or inevitable connection between RLS and Parkinson's disease, a relief. My mother's brother had Parkinson's, no other known descendants are known to have it. After switching from parmipexle to Clonzipam and back, and adding 200mg ferrous sulphate tablets, the RLS has subsided a lot, almost gone for now.

nightdancer profile image
nightdancer in reply toHopeless100

That is excellent. ;)

Good to hear, i hope it continues for you... :)

Hopeless100 profile image
Hopeless100

Many replies here seem to point to no direct or inevitable path from RLS to Parkinson's, but some people who have Parkinson's end up with RLS as well.

My RLS is getting rather less as the days go by. I take Parmipexole 0.088mg at night, and had been taking 200mg iron sulphate for a month, but now stopped. Blood tests came back normal before I started on the Iron tablets, but I took them anyway. I have mild RLS symptoms early in the evening if I am sitting still, radiating out from where the back pain is. Take about 3 times/day Zapin (30mg codene/ 500mg paracetamol) for that but not much RLS or sometimes none now, at night. The Parmipexole give pretty dreadful vivid dreams in which I wake up in, knowing it is a dream. Ugh. I think I will continue with the Parmipexole and experiment not taking it for a few nights to see what happens.

nightdancer profile image
nightdancer

There are many studies that say "not". RLS is not a precursor to Parkinson's I studied it for a decade, while taking care of my father who had Parkinson's Disease. Two separate conditions, can have both at the same time, which is called co-morbid conditions. The idea started years ago when Mirapex/Pramipexole/Sifrol was approved for RLS in 2001. Yes, some of the same meds are used, BUT, it does not mean that you are going develop PD just because you have RLS.

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