Any point in seeing neurologist?

[Organiker]

Is there any point seeing a neurologist for rls? It’s my impression that one’s GP can prescribe any of the know treatments. I would be happy to see a neurologist if they can add anything to help. Any thoughts?

[Hidden]

It really depends on your GP.

Unfortunately GPs aren't generally well informed about how to manage RLS and aren't familiar with the guidance.

If they're open to discuss and open to you giving them information then that may not be too much of an obstacle.

Another factor is that they may not be willing or confident in prescribing some of the possible medications, despite the fact that they can do if they wish. That is their perogative, because they are responsible for what they prescribe.

If they aren't knowledgeable and are open to being informed or are reluctant to prescribe, then it may be an advanatage to see a specialist.

However, unfortunately, specialists aren't particuarly knowledgeable about managing RLS either.

I wouldn't therefore bypass a GP and go straight to a specialist. See what you can get from a GP first.

The significant factor in this is it really helps if YOU are informed. I suggest you find out as much as you can about the management of RLS before seeking a consultant so that you can push them.in the right direction.

Something to watch out for particularly is that a GP, (or specialist) may immediately start prescribing drugs. People seeking help with their RLS also tend to want this because they're usually desperate to get help and want a "quick fix".

This is a big shame because in the longer term this is not a good option and drugs ought to be thought of as a last resort.

The first treatment that should be considered for RLS is iron therapy. Although not curative, it is a treatment. Drugs are not, they only give symptomatic relief.

The second thing to be considered is whether there are any aggravating factors making the RLS worse.

Forgive the lack of further detail, I seem to have written this several times today. Perhaps you could look at other members posts submitted today.

Even if you do go straight to the drugs you still need to seriously think about these two things.

As I wrote it would help you to be informed yourself. Hence I've given some links below you may find useful.

cks.nice.org.uk/topics/rest...

pubmed.ncbi.nlm.nih.gov/274...

sciencedirect.com/science/a...

uptodate.com/contents/treat...

[Organiker in reply to Hidden]

Wonderful reply. Many thanks. John

[Organiker in reply to Hidden]

My gp probably didn’t know much about rls but he did take the time to find out. I suspect that he had consulted the NICE site given the conversation that I had with him. All this is good. We decided that I should take clonazepam at night to assist sleep. We decided that risking augmentation with some of the other drugs was not something to do, at least in the first instance. The clonazepam works to some extent, so I feel that the rls is being managed despite a few restless nights here and there.

[Hidden in reply to Organiker]

Clonazepam is of some help.

Iron however is a treatment from which many RLS sufferers benefit. So I'd consider that as well.

[Hidden in reply to Organiker]

Is it raining in Dorset too?

[Organiker in reply to Hidden]

It’s trying to... J

[dklohrey]

Manerva is always a great source for information. I can only tell you of my experience. I have had rls for 25 years. I was fortunate to have been on requip for 20 years with a good outcome. Finally, I like many others started to get augmentation, a worsening of my conditions, spreading to my upper body and occurring during the day as well as night. I finally weaned myself off of requip and went on gabapentin. It improved my daytime conditions but improved my nighttime sleep very little. I am now on pregabalin with similar results to what I had with gabapentin. Not sure what to do next. On to your question about seeing a neurologist. I was examined by a neurologist, with a number of tests conducted. Conclusion - no recognizable cause for my rls. He attributed my condition to heredity (my mother had it).

[Hidden in reply to dklohrey]

That's what a neurologist said to me years ago, No cause - idiopathic RLS.

No mention that the main causative factor is iron deficiency!

[Hidden]

I see a sleep specialist as opposed to a neurologist. What's most important for me when choosing a medical practitioner is a) their knowledge/interest in the condition b) whether they're across new therapies / latest research and c) whether they're open to trying different approaches.I'm very happy with my sleep specialist and wouldn't have obtained the same level of service with a GP.

[Beechie2014]

If it helps, I have had rls for 15+years and been on roprinerole max dose. Forward to covid stress and I am getting almost no relief at all. Had an appointment with neurologist at local city hospital, was put on new med and booked a review for 6 months. That was 2 months ago and I'm still not receiving the new medication ( not a clue what it is as it was a morning appointment and I was in the no sleep fog!

[Hidden in reply to Beechie2014]

Oh dear. It seems you're not getting th best of care from the health services.

I presume that your local city hospital is a NHS trust.

What usually happens is that if you see a hospital specialist e.g. neurologist, then they send a letter to your GP. If they've recommended a medication for you it will say so in the letter.

It's then up to your GP to prescribe it.

They usually send the letter within about two weeks.

This has happened to me twice this year and both times I rang up the GP surgery and checked that they had the letter. It was only after I'd done this that I got the prescription from the GP and it was put on my repeat list.

If the GP hasn't received the letter you could either ask them to contact the hospital or contact the hospital yourself.

When prescribing medicines i.e. treatments doctors are supposed to inform you, (obviously of the name), but also of the benefit of it, the risks and the alternatives. They are supposed to have checked you have understood this.

Hopefully you know whether either the new med is in addition to the ropinirole, OR whether it is instead of the ropinirole.

I hope you are still taking the ropinirole and no more than 4mg. If the new med is instead of the ropinirole and not another dopamine agonist i.e. either pramipexole or rotigotine, then they should have given you some advice about stopping it.

If you are to stop the ropinirole you must NOT do this suddenly and you will need to wean off it slowly.

The standard alternatives to a dopamine agonist are either pregabalin or gabapentin.

I doubt it, but at some time, your GP or the neurologist should have discussed, besides medications, two other things with you.

The most significant of these is iron therapy which is the only known treatment for RLS. Meds only relieve symptoms.

With effective iron therapy many RLS sufferers can even manage without medication.

The other is to discuss with you if there are any aggravating factors, i.e. things that may be making your RLS worse. This could be other medications or it could be your diet and lifestyle.

Another signifcant factor in RLS is inflammation. This can make RLS worse.

Especially any bowel inflammation. Effective control of any bowel inflammation may lead to improvement in RLS symptoms.

I hope this helps.

[Beechie2014 in reply to Hidden]

Wow thank you for your reply. You seem to know more than my gp, are you a dr.? My roprinerole stopped working about 18 months ago, right around the time I was diagnosed with microscopic colitis! I have tried to raise the coincidence with both gp and neuro and both dont seem interested. Incidentally I am having to see a private dr for colitis so private is out of the question. Thank you again

[Hidden in reply to Beechie2014]

It could be coincidental that the ropinirole stopped working when you were diagnosed with colitis, but it would be a big coincidence.

Hopefully you can get some help with that soon.

[Organiker in reply to Hidden]

Certainly other meds will exacerbate rls. I take fluoxetine and that could be making matters worse. My rls actually started when I too Mirtazepine. Never again!

[Hidden in reply to Organiker]

Fluoxetine, like all SSRI antidepressants makes RLS worse.