Advice on neurologist and repinerole

[Shellmor13]

This is 1st time on here i was diagnosed with rla about 6 months ago by my gp i was back and forth for years before getting blood tests saying it was vitamin d levels then bloods coming back clear til eventually a doctor said i had rls i had never even hear of it before i am getting a lot worse sometimes to the point i just want to cut my legs off it gets so painful i was put on gabapentin which was increased to the point of 1800 mg a night without much success i am now being weaned off it and they have started me on repinerole my questiion is should my gp have sent me to see a neurolgist before now and how effective ia repinerole they want to put me on pregablin once off gabapentin which is going to take months sorry for the long post

[involuntarydancer]

Hi Shellmor and welcome to this forum,

One of the difficulties with rls is accessing knowledgeable treatment. A good GP is easily as useful as a neurologist. Many neurologists know little or nothing about the condition. It is much more important to educate and inform yourself. There are many accounts on here of people being treated by neurologists who have made everything worse.

As to your treatment so far, It is a good start that your GP didn’t put you straight on ropinerole but tried gabapentin first. It would be useful to know what dose of ropinerole you are on and also if it is helping your symptoms. Normally rls responds almost immediately to this class of drugs - such that it is a diagnostic assistant. If your symptoms respond well to ropinerole it is almost certainly rls.

Do a lot of research about ropinerole. It is in a class of drugs known as dopamine agonists and they have until recently been the first line treatment for rls. Unfortunately, they have a huge limitation in that after a while they effectively start to feed the very condition they are supposed to be treating in a process known as augmentation. Lots of doctors don’t know about the downsides of dopamine agonists and recommend increasing the dose as symptoms start to reappear. This is the worst thing to do as it accelerates the process of augmentation and makes it much harder to discontinue the drug. It is important to remain on the minimum dose and to ensure that iron levels are as high as possible if you decide to stay on it.

Your GP should have taken a serum ferritin test to check your iron levels. Raising iron is now the first line treatment adopted by rls experts. Insist on a serum ferritin test and make sure to get the actual figure - not just that you are ‘normal’. If the figure is below 100 start an iron supplement. Raising iron levels results in improved symptoms in many sufferers.

Find a list of all medications, over the counter substances and foods that tend to worsen rls and make sure you aren’t doing anything that could be making it worse. A ‘clean’ diet is very helpful to rls as is going to bed a little hungry.

It is an awful condition and little understood by the medical profession. I would recommend reading as widely as possible about if yourself. This forum is a great place to start and you’ll pick up all sorts of hints and tips as well as more general information. You could also look at the Johns Hopkins Hospital website. They have an excellent rls section. Also the US rls foundation is fantastic and an amazing website by Dr Mark Buchfuhrer - expert in rls and widely regarded as a saint in our world. His site is rlshelp.org.

[Shellmor13 in reply to involuntarydancer]

Thankyou for replying i am so confused about it all aa its quite new to me the gp did say my iron levels were normal but didnt give me a reading i am only on 0.5 of repinerole but told to double dose after a week i have decided to wait though until my doaeage of gabapentin is lower as i am getting side effects from that i get dizzy and feel stoned like i really dont want to b on gabapentin now but its a slow process i am still getting teŕrible rls but its all day and night i do get sleep as meds knock me out i go to bed when im literally out of it

[involuntarydancer in reply to Shellmor13]

Your rls sounds very severe. Are you taking any other medications? Some anti-depressants (the SSRIs) can worsen rls as can amitryptiline. Also beware benedryl (in cough meds), some anti-histamines and anti-nausea preparations.

It drives me crazy that GPs won’t give the actual serum ferritin figure. ‘Normal’ can be as low as 20 for the general public but this is FAR too low for an rls sufferer. You need the actual figure.

Personally I would be very slow to increase ropinerole from 0.5mg. Certainly I would do a lot more research myself before I increased from that dose. That drug can cause awful suffering - you will find many accounts on here.

Gabapentin side effects can be very difficult though they do tend to settle down after a few weeks. It is better to reduce slowly from that drug. There are people on here who fared better on pregabalin than gabapentin so it might be worth changing.

Are you finding the ropinerole is helping? If it made no impact on your symptoms when you started it that might suggest it is something other than rls you have.

[Shellmor13 in reply to involuntarydancer]

No difference at all but i am still on high dose of gabapentin its being reduced at 200 mg a week my legs get that painful i have often sat crying in bed and literally push my lega into the bed just to try and get some relief but i do have a very loving and caring husband who sits and trys to comfort me i just want a day with some relief the tops of my legs are the most painful the bottoms feel like electric currents running through them thats the only way i can describe it sory to go on but i really just need someone who knows what im actually going through

[Hidden in reply to Shellmor13]

Hi there I'm just following up what involuntarydancer says. If you have RLS or just RLS then it does sound very severe.

It may be that you have RLS plus something else or you may have something else entirely NOT RLS at all.

Things which make me think it might not be RLS are, the amount of pain you're getting, you saying you get the symptoms all day, the symptoms you describe are not all the symptoms of RLS.

I read you have had a blood test for iron. If this was the routine Haemoglobin (Hb) test, this isn't much good for diagnosing RLS because in RLS the Hb can be quite normal. You need a serum ferritin test instead.

There are four or five criteria for diagnosing RLS . These are

1 You get uncomfortable sensations in your legs accompanied by a strong "urge to move"

2 The sensation and urge to move appear when you relax or stay still

3 The sensations disappear or get less when you do move.

4 The symptoms occur in the evening before going to sleep

Some sources add

5. All other possible causes of the symptoms have been excluded.

The uncomfortable sensations are described using words like creepy, crawling, itching inside, buzzing or similar.

If the above 4 don't describe your symptoms, especially "urge to move", then it's highly unlikely that you have RLS.

There are other conditions which might produce the symptoms you describe. Your symptoms sound like the symptoms of a neuropathy, which in itself has several possible causes.

(Burning pain, shooting pain, electric currents, tingling, pins and needles, numbness).

Ropinirole, is a dopamine agonist, and dopamine agonists usually are effective for RLS, perhaps THE most effective. Unfortunately there are problems with dopamine agonists.

They don't always work, but if the Ropinirole doesn't work for you, then it also suggests the possibility that you don't have RLS.

I believe your doctor should have carried out other tests to exclude other possible causes of your symptoms. e.g. an MRI of your spine. It doesn't seem they have.

[jewbie68]

I have been on Ropinerole for several years and it works really well for my. I would recommend seeing a neurologist to rule out any other problems.

[Elijah5]

I have been on ropinirole for a long time, started with 2mg, went to 3mg then 4 mg over time ,that is the highest dose my G P would prescribe, you shouldn't have to see a neurologist, that could be a waste of time, I saw one on a referral, he was of no use, they do have Doctor's that specialize in sleep studies. Your general physician should be enough if he is a good one. I live in the US. MEDS are more stringent than in the U.K.

[Shellmor13]

I have found the pains in tops of legs calming down since lowering gabapentin just wondering if it could of been due to that medication my gp definately believes i have rls in lower legs but been unsure of topa of legs and the pains in tops of legs only started after being on gabapentin lower legs i have had priblems with for few years im staying on lowest dose of repinirole for now until i speak to my gp in few weeks

[caynsley]

Just as Manerva has stated, have you actually got RLS? I have had severe leg pain since receiving a blood transfusion over 4 years ago. Yes at the time my iron was low but I never had the urge to move my legs or kick them, but I too was diagnosed by a Neurologist with RLS and prescribed Neupro patches which made me ill.

Severe headaches and vomiting and my leg pain was not improving with having pins and needles, blood pulling in feet, burning sensation, muscle twitches and weakness. Turns out 4 years later I have a condition called POTS Postural Orthostatic Tachycardia Syndrome and BFS Begnign Fasculation Syndrome and not RLS! So I would always seek a second opinion.