New Visit to Neurologist

[Scottie99]

My legs have been going crazy recently. When I get a bad attack, my left leg which has a knee replacement can be so painful as well as restless.

I also have a tumour my spinal cord which is monitored on an annual basis by an MRI scan

I referred myself back to the neurologist I had previously attended. ( my opinion is he may be aware of RLS, his specialty is more towards Parkinson’s.

I have been taking 3x 1 mg of Ropinerole and 2 x 150mg of Pregabalin. I told him I was sure I was suffering from augmentation but he disagreed. He reckoned my RLS was a secondary symptom of the tumour.

Long story short, he has recommended I switch to one Ropinerole 4mg slow release tablet and wean myself off Pregabalin. Anyway I started on the 4mg Ropinerole yesterday, and surprisingly and had no RLS symptoms in the last 24 hours.

Long way to go, but fingers crossed

[involuntarydancer]

Your situation is complicated by the tumour and probably there are few on this site with the expert knowledge to advise but I would be very anxious about increasing ropinerole to 4mg when the consensus amongst RLS experts is that 1mg should be the maximum dose. Increasing the dose of a dopamine agonist almost always leads to worsened symptoms in the long run. In your shoes, I would email Dr. Buchfuhrer - you can get his email on his website rls.org - and ask his view. He is extremely generous with his expert knowledge and prompt in responding. Alternatively - or additionally - could you seek a second opinion?

[involuntarydancer]

Sorry the website is rlshelp.org

[Scottie99 in reply to involuntarydancer]

Thank you, I will do that.

[involuntarydancer]

Have you had your iron levels monitored? If the RLS is caused by the tumour iron may not help but it's such a tricky condition it's worth coming at from all angles. Also, just check the list of exacerbating substances (I think it is on the RLS UK website) to make sure you aren't taking anything that is inadvertently worsening your symptoms.

Finally, you probably know this already but it is worth building up a repertoire of things that help. Hot and/or cold showers/baths, solpadene (for the codene), yoga stretches, magnesium (unless counter-indicated for you), heat in bed, cold in bed, massage with a theracane stick or various other devices, foam rolling, tens machines, a cup of coffee (works on the adenosine receptors which are implicated in RLS), chewing nicotine gum etc etc. There is a seemingly endless supply of suggestions on this forum of things various sufferers have found helpful.