Can anyone recommend a neurologist in Scotland who is up to date with modern thinking re RLS ( I am prepared to go private).
I have been on Ropinerole for about 14 years. The neurologist I last attended a couple of years ago, and who I tried to explain to that I was suffering from augmentation, merely increased my dose to 4mg of slow release Ropinerole .
This worked for a little while but not any longer and I am clearly augmenting.
In the past I have tried pregabalin to no avail
When you tried pregabalin were you still on ropinirole as it won't be fully effective until you are off the ropinirole for several weeks? Also how much were you taking as many people give up because they weren't taking enough. Also have you had your ferritin checked as it needs to be over 100. Also, what medicines and over the counter supplements are you taking? If you list them I can tell you if any make RLS symptoms worse and if so perhaps give you a safe substitute. Good luck in coming off ropinirole. It is the right decision.
Thanks for your reply.
Yes, I was talking pregabalin and Ropinerole at the same time. I am sorry, I can’t remember the dose of pregabalin as was a while ago.
The only other drug I take is tamsulosin for enlarged prostate and recently naproxen for arthritis in my hand.
I have been taking oral iron tablets every other day for a couple of years but don’t know my actual ferritin level but my GP told me it was “ high”
Ask your doctor what your ferritin was as high for normal people may not be high enough for folks with RLS.
Make sure you get that ferritin number, because it's possible for iron levels to get too high and become toxic, even for RLS sufferers. If your iron level hasn't been checked in a couple years and you've been taking supplements, it's important to do that again.
As for looking for a neurologist, the RLS organization provides suggestions in the US; [rls.org/] but if you write to them maybe they'll have a suggestion in Scotland. Or link you to a chapter in the UK.
Here is an article about weaning off Ropinirole; [ncbi.nlm.nih.gov/pmc/articl...]
Take your time weaning off of that drug. There is a lot of variety in how people respond.
Good luck with that one, it's generally said that very few practitioners learn anything new after they've left collage and what they learned in collage was out of date because it was learned from books which took a long time to write and get accepted as teaching refferences. The current research points to many neurological problems being down to inflammation of the nerves most often chronic (i.e. due to diet) or ocasionally due to environmental toxins or traumatic injury. I've eliminated my RLS by removing inflammatory foods from my diet, these are mainly processed foods like refined sugar and starches wich raise blood sugar. Also I've removed refined seed oils from my diet as these contain pufas (polyunsaturated fatty acids) which cause oxidative stress and hence inflammation and only use olive oil, coconut oil or ghee for cooking. I also supplement iodine weekly (either a sea kelp supplement or dried sea kelp as in Japnese nori) as it supports the formation of the myelin coating of the nerves.
To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and refer your doctor to it at
Https://mayoclinicproceedings.org/a...
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