Well, following my post about my restless legs having abated, and thinking that this was probably the result of the iron skin patches I've been wearing, today I got a text from my doctor. I hadn't told her I think I'm cured, as she had agreed to consult a neurologist on my behalf and forward the various studies I had sent her to him/her.
The neurologists has now replied and this is my doctor's dispiriting text to me. It explains why she didn't renew my prescription for Gabapentin capsules (if I'd continued to take them, they would have run out today).
"Dear Mrs ,
The neurologist has agreed some further blood tests including iron studies may be helpful and I attach a form for these. You can book an appointment by calling reception or on line at the Lister:
The neurologist also assures me that ropinirole is the most effective treatment for RLS although you can develop tolerance and the dose may need to be increased gradually.
Kind regards, Dr ..."
The tests the neurologist suggested are the following:
Iron Studies (with Transferrin) (tPP) (LAB2734)
THYROID FUNCTION TFT:TSH + fT4 (tPP) (LAB3619)
VITAMIN B12 (tPP) (LAB67)
FOLATE, SERUM (tPP) (LAB69)
GAMMA-GLUTAMYLTRANSFERASE GGT (tPP GP) (LAB85)
There is nothing about fasting beforehand.
I cannot put into words how disgusted I feel about the neurologist's response. S/he obviously could not have read the studies I forwarded. When I think of all the people condemned to the sort of misery RLS causes, the sort that can lead them to thinking about ending their own lives, this is nothing short of negligence.
Is it worth going for the iron tests? If I do, I WILL fast beforehand.
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Desperate100
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The problem is that it will work so well that they won't want to come off it which is fine if they have tried everything else and nothing worked. But it is no longer the first line treatment for RLS because of the danger of augmentation. Gabapentin is.
So long as I outlive the damage to brain and vital organs taking Gabapentin. I would rather take nothing and know why we get RLS. Gabapentin just tricks the brain doesn't really correct the issue causing RLS. Just all interesting to read peoples thoughts and views and experiences. I am in the US so no codeine for me but that is what used to work for many years. One Tylenol 3 and no RLS. I liked that I only took it as needed.
Since you’re wondering why we get RLS… I’ve copied this from another post I replied to:
I’ve noticed lately that several members on here want to get to the bottom of what exactly RLS is and why we get relief when we stand… among other questions. I have all the answers 😅. After you read this you might want to give something else a try first before the Lyrica.
As I’m sure you know, RLS means we have small and few D3 receptors in the Substania Nigra (SN) along with brain iron deficiency, which probably caused our lousy receptors in the first place, per the dictates of our genes. I believe that most of us go a good portion of our lives either not knowing we have a lousy dopamine transport system or our symptoms are mild and intermittent. Until something happens ie an inflammatory disease, spinal or nerve injury or we’re prescribed SSRIs. If you ask I will explain how these events and substances make the “symptoms” of RLS worse, but not the receptors themselves. The worsening of our receptors is the territory of the DAs and possibly consistently over-eating. And it seems that age itself makes RLS worse.
Ever wonder why RLS is mainly a condition of the night? It seems it has to do with the fact that we can’t seem to store much iron in the SN. As a result, we rely VERY heavily on serum iron, which plummets at night (in everyone) with a nadir of midnight. Iron is the grease and glue that keeps our dopamine transport system chugging along. Thus, the solution for me, and many on here, is to take a highly bioavailable form of iron (ferrous bisglycinate) about an hour before bed, on an empty stomach. 25 to 50 mg. My RLS is gone in an hour for one night only. I must repeat every night
Just recently I found out that someone (probably a member on here) is marketing this concept which we on here came up with. It is a supplement called “Legs Be Still.” I’m not recommending it, I’m just amazed that someone out there has a pill with 65mg of ferrous bisglycinate in it and is telling people with RLS to take it an hour before bed on an empty stomach. Just the way we’ve been telling people to do for the past 8 years. Anyways, it’s that night time drop in serum iron that brings on RLS when you’ve gotten to that point in your life where RLS is no longer quiet or mild. By morning, serum iron is well on the rise and we get a reprieve from the RLS.
When we stand and walk dopamine is released in a nano-second to balance us and coordinate movement. Some people will sit on a stability ball in the evening probably not realizing that it works because whenever your brain senses imbalance it releases dopamine. I have stood sometimes while leaning on a wall and I can still feel some amount of RLS. I guess my brain isn’t sensing much instability. Strange feeling - I don’t like it.
So to sum up, we with RLS have this rather pathetic drip of dopamine, aka a neurotransmitter, that bounces down our central nervous system and makes its way to our peripheral nervous system where it quiets our arm and legs. The non-RLS world has a stream, not a drip. Woe onto us if anything happens to our bodies that lessens or interrupts that drip. The vast majority of the world can injure their spine and never feel so much as a twinge of RLS. Not so with us. The vast majority of the world can take SSRIs (which are dopamine antagonists) and not feel a twinge. Not us.
We are literally dancing on the head of a pin. One wrong move and we get all out RLS. Anything we can do to stay on that pin is a good thing. Many people swear that fasting after an earlyish dinner and until breakfast helps their RLS. Others swear by magnesium, but I haven’t been able to figure out why. In “theory”taking a benign, short acting dopamine ANTAGONIST, like berberine, should up-regulate our receptors, just as the Agonists down-regulate them. Must be taken in the morning. Just too painful if taken at night. Supposedly anaerobic exercise will up-regulate the receptors as well as intermittent fasting. To me, these are the closest things to a “cure” that are out there. But if you stop doing any of these things for too long then I assume the receptors will return to baseline which of course is lousy. However, these things can also be used to expedite a return to baseline after prolonged DA use. Baseline seems pretty darn good once you’ve been on DAs.
Got all that 😃
EDIT: The iron seems to work well while someone is on the DAs, but as soon as they’re off or even almost off, it’s not enough by itself. Nor is it enough if someone is on SSRIs. Nor does it seem to be enough by itself with certain auto-immune diseases or CKD or serious nerve injuries.
EDIT 2: It sounds like magnesium inhibits dopamine release so in other words it’s a dopamine antagonist though it’s necessary for the synthesis of dopamine. It has anti-depressant effects per lots of articles. Anti-depressant generally means anti-dopamine release. It’s given for migraines - maybe because dopamine antagonists are good for migraines. So I can see how taking it day in day out can up-regulate our dopamine receptors and in the long run be good for RLS. It sounds like calcium is actually more of a dopamine agonist. Well here’s magnesium: pubmed.ncbi.nlm.nih.gov/920...
BINGO: sounds like we should be taking calcium by night because it increases dopamine release and then magnesium by day because it is a dopamine antagonist that theoretically should up-regulate our receptors. Any lab rats out there feeling lucky? Article in attached post ¥
I'm not in the least surprised. Most neurologists have zero knowledge of RLS and that reply shows not just his lack of knowledge but outright negligence. Tolerance to Ropinirole and increasing the dose????Legal action for negligence may be the only way we can get neurologists to do their homework.
Most doctors seem to be ignorant about rls. My gp was insulted when i brought her printouts of current findings by john hopkins and mayo clinic. I think her knowledge is limited to the first few articles google search presents - most of the articles are a decade old.
How absolutely depressing. That both neurologist and GP should be so uninformed as to current treatment thinking and practice for RLS/PLMD is a disgrace. I'm sorry that you're having to cope with this and wish you ultimate success in your dealings.
I note that the hospital you mention is the Lister. My local Lister - I know there's more than one - is at Stevenage and I've had good relations with its sleep clinic. Better still because it's larger is the Royal Papworth sleep clinic in Cambridge. Its Dr. Mike Davies was instrumental in prescribing me Buprenorphine. If you are in this area and need further help/treatment, I'd recommend both.
I also go to the Sleep Clinic at Papworth. My consultant also allowed me to try buprenorphine and I continue to use it. I remember Dr Mike Davies when I had my iron infusion there. I had a long chat with him on how badly RLS affects people's lives and the frustration we felt about the medical professions ignorance in treating it. He was very sympathetic plus he listened to me! He's not my consultant though.
Please dont use the form that you disolve on your tongue - there is a current class action started for tooth loss and decay caused by that form of buprenorphine
They are sublingual tablets which are dissolved under the tongue. They dissolve very quickly. I have read some posts on here about problems experienced around tooth decay. I'm very mindful of this. Buprenorphine is the only medication that has worked for me, having tried everything else.
I know, this way I have control over how much I can take. I also doubt whether my consultant would agree to change the way I take it as I really worked hard to convince him to let me try it in the first place.
There don't seem to be alternatives, but here is a copy of FDA advice
SAMHSA supports the FDA's recommendations that simple steps can help reduce the risk of tooth decay in people taking buprenorphine. This includes swishing with water after allowing sublingual and buccal formulations of buprenorphine to completely dissolve and brushing teeth one hour after taking the medication.
originalText › statements
Statement from SAMHSA Leader on FDA's Drug Safety Alert on ...
Wow, 3 of us within consultation reach of the Royal Papworth sleep clinic and 2 with access to the Lister sleep clinic! What are the odds!
Re the Buprenorphine patches, I'll update on my experience when I lurch to end of this current cycle. My thanks again to all who have weighed in with information and advice. Long live the barefoot RLS/PLMD clinic!
I found that very interesting as I also live in the Stevenage Lister catchment area. I am intending to come of Ropinerole shortly when I am finished with breast cancer treatment. Frankly I am terrified of doing it but my experience of post surgery effects ( dreadful)from not being able to take my regular doses has spurred me on to take the decision. Thank you for this info.
Thankyou for all your sympathetic replies! I count myself very lucky that my restless legs have calmed and no longer cause me a problem - and I put this down to wearing iron skin patches for at least 8 hours every other day.
After more than 4 months of not sleeping properly at night, my body still doesn't want to go to sleep until about 2. Fortunately I am retired and can sleep through till when my body wakes up naturally, usually just after 9, so I'm getting 7 hours. I think it will take time and patience to bring those hours forward so that I am asleep before midnight.
I am extremely distressed by my doctor's and the neurologist's response. This is the third time this year a doctor has prescribed something or given advice that has caused me more problems.
Class action sounds like a good idea (or whatever the UK equivalent is.)
High iron levels can be dangerous. The problem is often the iron metabolism rather than the level of iron. Iron metabolism can be improved with a lactobacilus supplement (capsule or probiotic drink) if the diet is poor. Poor iron metabolism is ony a cause of rls in one in five people and many people have multiple causes most often caused by a bad diet containing many high GI processed foods,
it says "a recent study revealed that only 1 in 5 restless leg sufferers were actually iron deficient. [5] Restless legs and low brain iron levels in patients; J Haba-Rubio, L Staner. 2005" but if you check that article it refers to a study of 2 two patients with haemochromatosis.
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Advice would be much appreciated
Neurologist appointment 
iron infusions - how often and how many?
What to Expect at Neurologist??
Everything you wanted to know about the effect that time of day and fasting has on serum iron...in one paragraph.
