RLS is a new disease for me, onset about 5 wks ago. Although my Ferritin levels are considered normal: 103ng/ml. (any comments here appreciated), I take 30 mg of iron/day and also use a homeopathic remedy at night to sleep, it's by Hyland's called Restful Legs PM. They also have a daytime version. I suffer from tremors and sudden movements during the day in my face and upper body esp. abdominal area, appendages, as well as quakes/tremors in my lower body esp. gluteal area near sciatic nerve. all exacerbated by caffeine (I drink black tea only). Wine and beer send my legs into a waltz at night w/ residual tremors all the next day.
My PCP, who I am switching from, ordered a Ferritin study, pronounced my level normal and told me my options were to take Gabapentin, Ropinerole or one other. I am afraid, frankly, to take any of those based on posts I've read here and anecdotal evidence from an acquaintance who's an MD. This same friend recommended I try the iron supplements for a month to see what happens. I am also on an anti anxiety med Buspar, 10mg in the a.m., 5mg in p.m. I initially was taken off it as the MD suspected it might be contributing. Symptoms got worse but are better now that I'm back on and taking 2x/day. The symptom mitigation is, I suspect, due to some combination of what I'm doing but I don't know what specifically.
I'm getting by with the the iron, Hyland's, Buspar. I do take the iron capsule first thing on an empty stomach in the a.m. with Emergen C which is a 1000mg Vit C plus electrolyte powdered drink. I wait a 1/2 hour before having morning tea--is that enough time? Here's a link to purchase Hylands amazon.com/dp/B07LCWGK79?ta...
Any feedback or responses are appreciated. Thanks! BTW I am in Trump Land, not that I voted for the guy.
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Quickly: the Buspar maybe be the culprit if your symptoms are indeed RLS. Can you describe your symptoms in a bit more more detail? Because, from what you describe, it doesn't sound exactly like RLS. Check out: irlssg.org/diagnostic-criteria. You'll have to fit ALL the criteria. 'Urge to move' is the key one.
Hi Lotte, thank you so much for responding quickly. I have experienced the 'urge to move' on occasion when the tingling and vibrating in my butt/low back area grows so much that I practically jump up, it becomes unbearable to sit a moment longer. those symptoms have subsided -maybe due to the course I'm on and/or increased stretching??
Before the course I'm on and when in bed the legs were moving urgently on their own. also before I began the course I'm on i found it impossible to fall asleep, my brain was on high alert and about 1/2 hr to 45 mins after laying down the leg action started then i was up all night.
does the urge to move, as it relates to RLS, also strike when one is simply standing for a period of time? I stand when I use my computer because it is too uncomfortable to sit.
Also I saw elsewhere on this site an RLS sufferer experienced hot feet at night. that's something i also had also well before these current symptoms.
Hi, I agree with Lotte, your symptoms do not sound at all like RLS
The principal defining characteristic of RLS is the "urge to move" identified in the diagnostic criteria, which you don't mention.
Tremors are not a symptom of RLS
Whoever told you that you have RLS, I'm, afraid, has misled you.
There are many possible explanations for tremors or what you're experiencing may be fasciculations. Anxiety may be a contributing factor.
Hi Manerva, I responded to Lotte's thread. I'm not familiar w/ fasciculations, read a bit on Mayo clinic site-while attempting to stay away from the more dire diagnoses they're related to-perhaps you can tell me more? this condition came on very suddenly after stressful personal events and at the beginning of the Shelter in Place COVID orders here where I live. Thank you.
Fasciculations are small movements of very localised muscles or muscle groups. They can be felt, but significantly, they are visible.
More or less everybody gets fasciculations. Usually around the eyes or in the hand. They can however be anywhere. They may last a few days or even a few weeks then disappear.
If they are more widespread or more persistent, then obviously that is worrying, but usually harmless.
Benign fasciculation syndrome is usually due to some other underlying issue, which itself is usually harmless.
Stress is a factor and that's possibly what you're experiencing.
Tremors tend to affect larger areas and there's a few types.
If there is a neurological condition caysing them, you'd probably have other symptoms. Essential tremor is also a harmless condition.
Stress can cause tremors
When I have suffered severe stress in the past, I 've had to be prescribed a beta blocker to stop me shaking!
Smaller visible movements are not typical of RLS. Any involuntary movement in RLS tends to be the whole leg, arm or shoulder.
Thanks Manerva, this explanation is very helpful although I did experience whole leg movements when going to bed which led to my consult with the PCP...and still do although more subdued at this time which may be due to the increased 'gentle iron' course I've been on....?
Typically, whole leg movements can occur with RLS, but when these occur they're usually involuntary and occur in conjunction with the "urge to move". RLS sufferers tend to refer to this as twitching, not tremors.
Doctors tend to get a little confused by this, as involuntary movements are associated with PLMD (Periodic Limb Movement Disorder) which is a separate but closely related condition.
PLMD however, more commonly occurs when you are asleep and you may not be aware of it. The leg movements are a bit different.
The urge to move remains the principal defining characteristic of RLS.
Yes symptoms can occur when you're just sitting down and can occur anytime of day for some people. Even so, they are usually worse at night and there is a physiological reason for this.
If you have visible tremors (or fasciculations) these aren't typical of RLS. They may be coincidental and stress related. Incidentally beta blockers can make RLS worse!
Stress remains a factor in RLS.
Gentle iron is not a medicine as such, medicines give more or less immediate results. Gentle iron , if it works at all, may take weeks or months to have any effect. So for example, if someone says they take an iron tablet one night and their symptoms are better, then next night they don't take it and symptoms are worse, this is probably coincidental. Iron won't make that much difference in one day.
To best judge what effect the iron is having it's better to have a blood trest for serum iron, ferritin and transferrin. Ferritin is a fair indicator of the effect of the oral supplement. While your ferritin level remains below 100ng/mL then the iron is not going to be very effective.
Here is a link to some upto date information on the non-pharmacolgical and pharmacological treatment of RLS and PLMD which you may find helpful.
I neglected to respond to this post from you. My ferritin prior to beginning gentle iron supplement = 103ng/ml. I've been on the gentle iron for 3 weeks now. When my leg moves, it is involuntary, I have no control over the urge to move.
Ok, i'll explore the possibility of needing more iron, Manerva and. yes, I suspect our hiccups in this dialog are a matter of me learning the vernacular, as a newbie I am still struggling to articulate the sensations which are completely new to me and with whom, other than this wonderful group, noone to share it with and help me to articulate them.
The closest I can come to a description is that it feels as if someone is strumming the nerves and muscles inside my gluteal/thigh, calf area. when it's really bad it feels as if someone's also 'rolling' a major nerve in the sciatic region between their thumb and index finger. this is where it feels extremely sensitive and a sure sign that when i lie down my legs will be kicking and jerking.
'It' also feels like a 'crawling' feeling, as if something is making its way among my insides. all this is while I'm awake and going about my daily life whenever I'm "triggered" (perhaps by some type of sugar, something Eryl suggested? comments?) . Then when i finally go to bed the body converts these sensations into kicking and jerking legs. I cannot get to sleep w/out help.
I like your description of the RLS sensations. They sound right. "Creepy crawling" is a common description. Some people say electricity. A recent one I read was "like millions of ants". Sometimes for me it feels like water trickling inside my leg or a chill draught blowing on my legs.
When I was young my dad used to complain about a draught on his legs which came through the door behind his favourite armchair. He was always shouting "shut the door". In the end, he actually bricked up the door, but he still complained about the draught. He didn't sleep well and he took quinine. I think he had RLS, but never knew what it was. It's inherited.
Human bodies are peculiar things, parts of them want to do things and parts want to stop doing the same things. The end result is supposed to be somewhere in the middle. So our nervous system, partly wants our muscles to move, partly it wants to stop them moving. If it works it means we can move when we need to move and we can stay still when we don't need to. The signficant elements in this "balancing act" are various chemicals which our nervous system uses. These "neurotransmitters" include dopamine, GABA, glutamate and adenosine.
In RLS it's a theory that the part that want's to stop movement isn't working properly, so the part that want;s us to move ends up trying to move us, or even succeeding in moving us even when we don't need to.
RLS then, according to this is a state of hyperarousal or oversensitivity, thus causing the horrible sensations and the involuntary movements.
Some RLS sufferers, I read, prefer to deny these theories and insist that RLS is due to diet alone. I'd say this is unrealistic. Diet may be a factor, but it's not the sole factor.
I experience myself that when I eat "fast" sugars then I can get an energy hit as my blood sugar levels intially rise and this might be one reason sugar can trigger RLS symptoms. Unless you have diabetes however, blood sugar levels are normally maintained within an optimum range, neither too little, not too much.
The scientific view of idiopathic RLS is that it is due to dysfunctions of the above neurotransmitters. Why the dysfunctions occur is another matter around which there have been studies, I don't recall that any of them consider CHO, per se, as a cause of idiopathic RLS. Iron is a contributing factor however.
The "standard" theories of RLS are partly supported by the fact that dopaminergic medicines and glutamate reducing medicines DO relieve RLS symptoms.
I'm not denying that there are other things that help too.
I sure hope you're in my part of the world, otherwise I'm concerned about whether you're getting enough sleep..... you are being so helpful. Love the anecdote about your dad and also the explanation about the nervous system's debate or maybe it's better to say, in our case anyway, poor decision making.
hypersensitivity/arousal sounds right. what's behind that? are there any theories?
what puzzles me is the onset for me seemed so sudden, from zero/sleeping like a log through the night to nightly symptoms and little sleep. same mattress, same house, same way I've been spending my days. My exercise has picked up more the last few months, hiking steeper trails, also I had to go off red meat/eggs due to cholesterol issue. (also inherited) That is the only major lifestyle change I can think of. could there be a relation?
I thought back to whether there could've been a gradual onset of this for me perhaps in the form of symptoms that weren't so radical. Thinking back about 4 or 5 years I remember being on my back in the hospital (for unrelated matter) getting an IV and suddenly feeling as if I were going to scream if I didn't move off my back and onto my side immediately, I had to shove all the tubes around so I could do so. since then lying on my back, even with knees bent to read or what have you, has been extremely uncomfortable. I stretched more but that does little. I wonder if this was a precursor to what's happening now. Also, the last 3 years or so I've been unable to sit upright for more than a 15 mins. or so, the creepy crawly feeling in my gluteal area becoming unbearable to where I either have to jump up and stand or lie down. Not sure if it's related....?
Interesting RLS is inherited, neither of my parents ever mentioned they have this problem. One of my grandparents may've but too late to know now. Do you have any recommendations on what wording or logic to use with a PCP to get to a specialist consult and have this diagnosed?
I'm guessing you live in the US. Like most folks in this forum, I'm in the UK, but it is truly international.
Thanks for the concern about my sleep. I do get enough, at least now. I've never been great at getting to sleep early, so although it's odd timing I get about 8 hours a day
Two years ago I was getting a maximum.of 3 hours a day and had been doing on and off for years. That was due to a dopamine agonist.
I think our parents, grandparents etc often had RLS but never knew what it was. I've heard RLS described as the most commonly occurring condition that nobody knows about!
They used to "put up" with things we struggle with.
I also realised, a couple of years ago I suffer Aspergers (Autistic spectrum disorder). I wasn't diagnosed when I was young, because it wasn't being diagnosed then. It wasn't known to be a condition. My youngest daughter has been diagnosed and I have a nephew who's been diagnosed. Looking back, I think my mum.suffered it too. That's where I got it from.
RLS is a little different, it was first described centuries ago.
Idiopathic RLS is inherited and can actually start to be experienced when quite young. Often it's described as "growing pains". I experienced it for at least a decade before I had a name for it - restless legs. It was quite mild and I thought little of it.
I managed it with no problem until an antidepressant triggered severe symptoms and they came on fairly abruptly.
You may as you say have been suffering mild or precursor symptoms for years. It usually gets suddenly worse when thete's a trigger but it's not always the case.
Stress can be a trigger and that certainly seems to be on the increase for a lot of people at this time.
If might be a bit boring but there are a few theories about RLS, it's quite complex, there may be several causes
One theory is that there is a dysfunction of dopamine, a neurotransmitter, in a certain area of the brain. The nerve cells in this area are responsible for inhibiting motor nerves. Because they're not working properly, they fail to inhibit the motor nerves which become oversensitised.
The problem seems to be that there is a lack of receptor sites in these cells for dopamine, so the dopamine can't work This is borne out by the fact that "dopamine agonists" stimulate the receptor sites to work better. When they work the cells then inhibit motor nerves and calm them down.
Additionally, these cells, lacking receptor sites, work even less when dopamine levels get low. Dopamine levels do vary over a 24 hour period. This is known as a circadian rhythm. Dopamine levels are at their lowest at night, hence RLS is worst at night.
Why there is a lack of receptor sites is another issue and it appears iron is an important factor.
Another theory is that there needs to be a balance between two other neurotransmitters in the brain. These are GABA and Glutamate. Simply put, GABA calms thing down, glutamate stimulates things. It's thought RLS can be due to an excess of glutamate. This explains why insomnia is associated with RLS and why medicines which block glutamate can relieve symptoms i.e. alpha 2 delta ligands e.g. gabapentin. Why there is an excess of glutamate is another issue .
There are a couple of genes that are present in people with idiopathic RLS
There are other theories, but there's little research evifence to support them.
The fact that alcohol makes it worse indicates to me that your rls is caused by high blood sugar and the resulting high insulin release. I would suggest that you avoid alcohol, foods containing sugar like cakes and biscuits and fruit juices. It's my belief that low ferittin is another symptom of a bad diet and not a cause of rls.
Hi Eryl, you're correct, low ferritin is not a cause of RLS.
However it is an indicator of low levels of stored iron which can lead to the brain iron deficiency that's associated with RLS.
That low stored iron and hence low ferritin may arise because of the lack of iron in the diet may be true. However there other reasons for stored iron depletion.
As always there are good reasons for avoiding excess sugar and carbohydrates.
Agreed, my diet consists mostly of vegetables, legumes, whole grains, fish. very rarely processed white flour and sugar. I'm down to a very occasional glass of wine, sadly, due to the symptoms it brings on.
The problem is that although whole grains are better than refined grains, the body still treats them very much like sugar, after all most alcoholic drinks are made from malted grain because of the high sugar content.
I read some of your other posts about reducing sugar in the diet and it relation to RLS. My diet is devoid of processed sugars but noting your comment regarding potatoes and bananas being sugar bombs I ate a banana tonight (10pm my time). Within minutes i experienced the lower body 'crawling' sensations, the ones that precede to involuntary leg movements when I lay down. Interesting. What's your view on brown rice and Bulgar grains? Other than those, I rarely eat processed white flour based goods. Can you share more details about your current diet? what's ok, what's not ok? Thanks.
Put more succinctly, I believe what Eryl is trying to say is that ultimately ALL carbohydrates may have the same effect as refined sugar.
Any carbohydrate (CHO), has to be mechanically and chemically broken down into glucose before it can be absorbed from the gut into the blood stream. The speed at which this happens varies depending presumably on the nature of the food containing it and the actual carbohydrate molecule.
Some CHOs are therefore "fast" and some "slow".
Alcohol is not actually a sugar, although it is a CHO. In addition to being a CHO however it does have effects on brain chemistry and it's this characteristic that makes it an RLS trigger, not the fact that it's a CHO.
Excuse the profanity but you can't get p****d by eating bananas.
Fruit does contain sugars or simple CHOs that can be quickly absorbed. Any food with starch in it, potatoes etc has a lot of CHO, starch is CHO. Grains have CHO, but if unrefined it takes more to digest it, - slow CHO.
CHO is a normal and natural element of a balanced diet, our bodies use if for energy. Unfortunately, we tend to eat too much of it and that's when problems start.
I don't think that excessive CHO in the diet has scientifically been shown to cause RLS, but it may be an aggravating factor. A trigger to a pre-existing tendency.
I don't believe that "low" ferritin level is caused by a "bad" diet either, even if the meaning of "low" and "bad" are clearly defined.
Any value of ferritin above 15ng/mL is considered "normal", it's only "low" for someone with RLS. In addition, ferritin is involved in iron metabolism, not CHO metabolism.
A low CHO diet might be of benefit, but you might also consider keeping a food diary, i.e. keeoing an ote if wht yiou eat and what your symptoms are like. Then you may find specific foods that trigger your RLS.
Thanks for further articulating this, immensely helpful. Back to the banana situation, probably to your dismay, I'd had the twitching largely under control the last few days and yesterday in particular. I'd had a lo alcohol beer earlier w/ dinner and felt fine for the couple hours after that, it wasn't till I ate the banana later that night (10pm) that the twitching began in earnest to the degree that it affected my quality of sleep.
maybe it was a cumulative effect of both the beer, dinner and the banana?dinner was tofu with shishito peppers, korean hot sauce, a miniscule amnt of apple cooked in soy sauce, ginger, honey, sesame oil sauce on 1/3 cup of brown rice. i had a piece of dark choc w/ 3 grams of sugar. again, felt fine for the couple hours after ALL that until the darn banana. ok maybe this is too much info but i'm truly in the woods on this. food diary is a great idea. commences right now! BTW, it is 14 hrs after the banana incident and I am still twitching away, noticed my morning tea further aggravates.
probably a language thing but wasn't able to translate the p****d in your message, inferred the meaning tho I think
back to the point re: diet, my typical diet is a long ways from what's considered 'bad', over here anyway, but may not be 'good' for my condition. ok, that's the last value criteria I'm going to address.
Your diet sounds yummy. It may be that the combination of beer (alcohol), sugar (banana or chocolate) and the TIME, (RLS is worse in the evening) that conspired against you.
I wouldn't dramatically change your diet, but you might want to avoid bananas OR have them earlier in the day. You hear good and bad about nanas, the good stuff I hear is that they are a good source of potassium (low potassium can cause RLS) and also serotonin, which can help sleep. Other's say nanss are bad for you.
They used to say that smoking nana skin could make you feel good, I could never get them to stay alight!
That’s funny -smoking banana skins is a new one to me- Sure seems economical though.let me know what you find out. Why is rls worse in the evening?
Big sigh of relief, by the way regarding your comments on my diet which is about as strict as I can make it already.
Any ideas how I can approach my doctor to get to a Specialist consult? I know if I lead with RLS as the complaint I’ll probably get the same responses as before. I apologize if you have already responded to this.
Responding to an earlier thread from you, my only motivation for seeing a specialist in something whether it be a neurologist etc. is to find out whether or not I actually have RLS and if I do what’s the alternative to gabapentin, ropinerole, etc. which quite frankly I am afraid to start taking based on what I’ve read about these medications here. Maybe my fears are unfounded but first things first: a proper diagnosis - is a neurologist my best bet?
It is a good idea to see a neurologist. They can help confirm the RLS diagnosis. Particularly they may be able to confirm it's not actually something. else.
A diagnosis of RLS is made by comparing your symptoms to the internationally recognised RLS diagnostic criteria.
Gabapentinoids, dopamine agonists or opioids ARE the options for the "medical" treatment of RLS. Levodopa is also very effective, but is so problematical that it's rarely prescribed for RLS and can't be taken on a regular basis.
There are no other truly effective alternative medicines for RLS.
There are non medical alternatives, but a neurologist will know little about them, they're not medical. They may know about iron.
I would encourage you to avoid taking any medication if you can.
This link outlines some of the non pharmacological renedies for RLS that are known to work.
Other members of this forum may suggest other measures.but it's difficult sometimes to distnguish what's likely to be an effective solution for you. There are many myths around RLS.
It's good you've read about the consequences of taking some RLS medication. A neurologist is unlikely to tell you, although they should.
Ultimately, it is your choice and your preference about how you attempt to live with your RLS. It is life long For some people, they decide that the benefits to be gained from taking a medication far outweigh the possible side effects.
I eat brown rice regularly and find that it has little if any effect on rls. It is a complex carb which takes time to break down into sugars, but being high in fibre, it passes through the gut quite quickly so that there's less time for absorption and the fibre lines the gut walls to form a filter. It is also high in magnesium which may help.
If your general practitioner wants to manage this, I would really suggest that you ask him/her for a consult with a neurologist who is familiar with this disease to get started. It is not as simple as just opening up the PDR and finding a drug for RLS. There are many things to consider. At a minimum, you should be able to see this specialist yearly to evaluate your and make any necessary changes in your treatment plan. This would also give your general practitioner someone to use to bounce ideas off etc.
My understanding with the Ferritin levels is that we as RLS patients need a higher Ferroton level than people without RLS. If this is not correct, please correct me if your are a medical practitioner.
Hi Jerold, I agree a consult with a neurologist would've been the next logical step however my GP at the time insisted that the diagnosis was RLS based on the Ferritin lab and that GPs, not neurologists, diagnose the condition. I belong to a healthcare system where access to specialists are dictated by one's GP. I am in the midst of changing GPs for just that reason.
I am not sure regarding the Ferritin needs of those w/ RLS vs those not, what is considered 'higher'? Perhaps someone else can chime in here. My Ferritin was 103 ng/ml which is considered 3 points above normal per the protocol here but is that an adequate level for one who might have RLS or whatever it is I actually have? I don't know. Nevertheless since beginning a course of gentle iron about 3 weeks ago as well as a homeopathic remedy and modified Buspar dosing my symptoms have improved to the point where I can sleep at night. It is a blessing. My concern is that my actual condition has not been diagnosed and that's my next task.
Some RLS experts recommend ferritin should be raised to 350ng/mL. This is not that easily achievable on oral supplement alone.
Sure GPs/PCPs can prescribe treatment for RLS, but tend not to be very knowledgeable or up to date. You may fayre better with a neurologist, but not necessarily. They're not particularly knowledgeable either.
In addition medical practitioners will prescribe medical treatment i.e. medications.
If you want to go down the route of taking RLS medication your PCP can prescribe one. See the link in my other reply to you.
The preferred "first line" medication ia gabapentin or pregablin, this is because of the long term risks of dopamine agonists.
If it's still not entirely certain you actually have RLS your PCP might be willing to give a trial dose of L Dopa. This s extremely effective in stopping RLS symptoms more or less immediately (within acouple of hours). If it works, then you have RLS. This is for a test only, not recommended as an actual treatment.
Your other options are to see a sleep specialist, a sleep study can see if you have PLMD or sleep apnoea, often associated with RLS.
There are also a few good RLS experts in the US depending where you live.
Manerva, this is extremely helpful, I truly appreciate your investment in helping me. I'm in the midst of changing insurances and hope to find a better PCP to begin this journey with again. I'll continue taking the Gentle Iron and the Hyland's homeopathic remedy, it gets me to sleep which is the most important thing for me right now.
Hi Manerva, I disappeared for a while but now have an update. I have a new PCP. He gave me a referral to a neurologist and, to help me sleep/deal w/ symptoms in the short term, he prescribed 300mg/ Gabapentin: 100 in the a.m., the rest in the p.m. before bedtime. I am still hesitant to take it. I am afraid this the beginning of the slippery slope of the typical protocol I've read about here, the outcome of which sounds bad. Altho I am glad I'll have a chance to get in front of a specialist, which wasn't an option w/ my last PCP. Is there any harm in taking Gabapentin in the interim until they figure out what's really going on w/ me? Thanks,
I think acupuncture is great for some things. I've had acupuncture a couple of times with good effect. However, I didn't have it for RLS. I believe it doesn't work for RLS or if it did, would be impractical. I can't imagine sleeping with needles stuck in
I have heard of the restiffic device. I believe it is "approved" by the FDA in the US. However, as I've recently learned, just because the FDA approve something doesn't necessarily mean it works. In addition what a manufacturer claims a device does isn't necessarily what the FDA approve it for. I tecently read about a device that the FDA approved for pain relief, but the manufacturer claimed it "repairs" nerves.
It may be of some comfort for RLS, but I believe that i it dies relieve symptoms, as soon as you stop using it, the symptoms return.
I understand your reluctance in taking medication and it is to be avoided if possible. The slippery slope you've read about can occur, but mainly applies to dopamine agonists, (DAs). DAs cause dependency, so that for some people if you miss a dose, symptoms can be severe. They also cause augmentation, which is very severe. They're difficult to withdraw from. They also apparently cause permanent damage which can make RLS worse.
Gabapentin isn't without its problems, but it doesn't cause augmentation and isn'y quite so hard to withdraw from. I've also found missing a dose isn't quite so immediately harmful.
I can say that 300mg gabapentin a day will probably have little effect on your RLS. Taking only 200mg ay night will be even less effective. I don't understand the 100mg in the morning.
900mg is considered the minimum effective dose.
I'd suggest then, that if you do want to go ahead and try it then be prepared to take at least 900mg. This could be 600mg 2 - 3 hours before bedtime and 300mg 2 - 3 hours before that.
Splitting the dose am and night is more appropriate for other conditions.
300mg is the starting dose, it can then be increased by 100mg a day or 300mg every 3 days.
You'll probably have to take it at least for 3 weeks to get full effect.
As you say, you can always withdraw from it once you've seen a neurologist. However, I'm not sure what you're expecting from a neurologist. Neurologists are allopathic medical practitioners and only offer medical treatment i.e. medications.
If you want alternative remedies, you won't get any from a neurologist.
This is a complex medical issue and if your GP does not want to refer you, ask them what the appeal process. Alternatively, ask a bunch of questions that are above hier (I use hier as a non-gender-specific pronoun for him/her and hesh for he/she) understanding, such as what part of the brain is not getting enough iron, ask hier to review all your medications and tell you which ones interact to increase your RLS symptoms. When hesh does not have an answer, explain why it is important for you to see a specialist. This needs to initial managed by a competent neurologist or sleep medicine physician. RLS can be a life-altering event. I have known two RLS suffers who chose suicide to deal with their unmanageable 24/7 RLS. I was about there until I got real concern, understanding and treatment from a competent medical professional.
Just to point out that not all health services are the same so some of what you write isn't feasible in the UK for example.
Since most members of this forum, which is UK based, dont identify where they live, it isn't always easy to work out where they do live. Sometimes it's a matter of picking up on some cues. E.g. UK members usually refer to their primary care doctor as "GP", meaning General Practitioner. US members tend to use the term PCP, Primary Care Practitioner.
Confusingly, in this case, ferritin levels in the UK are measured in micrograms per liter (ug/L) in the US it's nanograms per milliliter (ng/mL). They're actually the same thing i.e. 1ng/mL = 1ug/L.
Another clue is that UK members tend to refer to drugs by their generic names e.g. pramioexole, whereas in the US they tend to refer to their brand names e.g. Mirapex, in Australia, Sifrol.
There is one National Health Service in the UK and there are national guidelines issued by a national organisation called NICE which helps doctors decide how to manage various conditions, including RLS.
GPs in the UK CAN diagnose RLS and the NICE guidelines advise how to manage it. They also state the criteria for referring somebody to a specialist. If somebody doesn't fit the criteria, then they won't refer them.
In additon, the specialist will not be a RLS specialist. They're usually a neurologist. Being a neurolgist does not necessarily mean that the specialist has any great expertise in managing RLS. Neurology is low down on the list of medical priorities and RLS is low down on a neurologists list of priorities.
All to say, for some health care systems, e.g. in the UK, it isn't necessarily any great advantage to see a specialist. It's necessary to be referred and there may be a "waiting" time of several months. Specialists also tend to diagnose, prescribe and then advise the GP and may never see a patient again. They don't have the capacity.
This points to the fact that it's almost essential for RLS sufferers to become "patient experts", possessing knowledge about their condition and how to manage it. To some extent this is recognised as part of the UK health care system. For some conditions e.g. cancers, there are recognised patient expert courses.
Unfortunately, not so for RLS.
Perhaps RLS UK should start one.
• in reply to
I initially misread your comment on nanograms/ML and micrograms/L. You are correct. They are the same. A nanogram is 1000 time the size of a microgram, but a ML is 1000 times as small as a L. My apologies; I thought you were comparing them to be the same in the same volume of liquid. When I reread it, I realized you were correct. Sorry for my incorrect statement earlier.
We have the same issues with our HMO's here sometimes. There is always some sort of appeals process out there. If you make enough noise, someone will do actually something, even if it is just to make you go away <VEG>. At least that has been my experience.
You are also correct about the generic name vs. generic name for drugs. My mother used to take Valium and diazepam at the same time because the bottles said something different so I was wrong about here medications. If I do not know either a brand or generic name for a drug, I type it into a browser and it will tell me somewhere in all that information, the other name.
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I mention generic and brand names because in the UK, NHS doctors are not allowed to prescribe a brand name of a medicine only the generic name. Therefore we usually refer to them by the generic name, thus indicating we live in the UK.
The generic name of a medicine, whatever the brand name is printed on the packet and in the instruction leaflet.
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