Neurologist referral

[Moonwalker1967]

Yippee, my GP in the UK is referring me to a neurologist in the Doncaster hospital after all. Anybody on here from the Doncaster/Sheffield area?

I am off Pramipexole due to augmentation. And need extra help. Only get 4 to 5 hours sleep with lots of walking up due to plm.

Any suggestions for me, so I come prepared.

Can a brain MRI scan show RLS?

My kids have PLMD, ADHS and rls too. I have had this since childhood. Unfortunately have IBS as well. Noticed it's better since avoiding milk.

Thanks in advance for your help.

[Madlegs1]

MRI scan won't show RLS.Only diagnosed by meeting all of 5 signs ,including urge to move legs for relief.

[Moonwalker1967 in reply to Madlegs1]

Shame, we have no real proof then, apart from sleep laboratory, like they do in Germany. No chance of that in the UK, I guess.

[Madlegs1 in reply to Moonwalker1967]

Are you talking about "periodic limb movement " which can be diagnosed by sleep study( and sleeping partner!)

RLS is slightly different!

Mostly occuring when awake, -just preventing actual sleep.

[Moonwalker1967 in reply to Madlegs1]

Thanks for your response. I am unable to sleep next to a partner for years, as I kick and move arms and legs most of the night. I have both RLS and periodic limp movement. At the moment the limp movement is scary as it is like a mini seizure after coming off Pramipexole 0.88 mg. I want to check if I have anything else apart from rls and plmd. I know RLS is different. It happens when tired and sitting down and booom there it is. Need to walk. Get muscle pain next day all day if very bad. Again, walking and cycling helps. No visit to the cinema and long trips possible, unless on the train as I can walk then. The constant tiredness over so many years is frustrating! Now hay fever on top of it all!

[Moonwalker1967 in reply to Madlegs1]

Wondering if it is epilepsy or something else as my big toe moves and unable to stop and I kick with legs and arms uncontrollably. Wondering how many of us have epilepsy diagnosis. Mmmmmhhh... !?

[Daewood1949 in reply to Moonwalker1967]

I never thought of epilepsy-interesting theory Moonwalker1967.

[SueJohnson]

Ask for gabapentin. If you haven't had your ferritin checked, ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100 and your transferritin saturation to be over 20% but less than 45%.

[Daewood1949 in reply to SueJohnson]

Sue, thanks for this advice.

[LotteM]

Sue's advice is good but somewhat limited (sorry Sue, you're doing a great job). Usually she refers to the updated treatment guidelines for RLS in the Mayo Clinic Proceedings 2021: mayoclinicproceedings.org/a...

I suggest you read it. The boxes are very good summaries and advices for each step/possibility. And bring a copy to tue neurologist to discuss with with her/him to. Do go prepared and bring someone near and prepared as well to support you. It is wise to already have an idea of what you want.

The first step is checking potentially aggravating medicines, the second iron, and then gabapentin or pregabalin, but it does not always work well after augmentation.

Also make sure your neurologist confers with a specialist on intestines (don't know the English name) as the IBS may hamper or interfere otherwise with not only the absorption of iron, but also other minerals, nutrients and of course medicines. Given your IBS a very tailored diet may assist as well in controlling your RLS, but I surmise that may take quote some trial and error.

Good luck.

[Moonwalker1967 in reply to LotteM]

Thanks, that's a great idea.

[Joolsg]

Many UK neurologists still refuse to accept that low brain iron causes RLS so ask GP for full bloods beforehand and if serum ferritin is below 100, ask the neurologist to arrange an infusion.Also they still try to prescribe the Neupro/Rotigitone patch to people who have been on Pramipexole or Ropinirole and augmented. So refuse. The patch will quickly cause augmentation again and you're back to square one.

If they put you on pregabalin or gabapentin, it will take a few weeks to have any effect. If it doesn't work after 2 months, opioids may be needed so ask if the neurologist will prescribe Oxycontin or Buprenorphine.

Finally, IBS causes mal absorption of iron and could be the main cause of your RLS so raising ferritin should really improve your RLS. Consider getting a really good prebiotic like Symprove or VSL. If you can control the IBS, your iron levels will improve.

Good luck.

[Moonwalker1967 in reply to Joolsg]

Again a big thanks for your valuable advice, Jools.

[Spurdog1]

I cannot add to other comments, but why is it i keep running into Ex-Donny's, or even Donny's. If i said Cantley to you it might make sense. This month is weird. Donny

[Spurdog1]

BTW my heart goes out to you.

[Moonwalker1967 in reply to Spurdog1]

Hahaha, yup! Cantley sounds familiar. I am based in Mexborough, originally from Hannover in Germany. Long story why I am here. Thanks for caring.

[Moonwalker1967 in reply to Moonwalker1967]

PS: Any advice on where I get best treatment for my RLS torture?

[Henshaw241241]

Hi I was on the same tablets that you was on very bad then I went to the doctors where they sent me to see a neurologist the best thing ever happened she checked me all over then she Put me on pregabalin 75mg I take 1tablet at 6 pm then 3 tablets at 9 pm the best thing happened in years good nights sleep Tony Henshaw 241241 Take Care

[Mafopp5]

I am not sure this will work for you, but it did for me. I suffered severe augmentation a couple of years ago and, frankly, was suicidal. Fortunately (or not), I also had a severe spinal injury many years ago and have been on night-time co-codamol and diazepam for when the pain is excessive. I do NOT take these during the day. However, I have found that a mixture of Mirapexin and Co-codamol actually keeps my RLS inactive.

[Moonwalker1967 in reply to Mafopp5]

Hi ...so glad this has helped you. How come people get suicidal when weaning off Pramipexole? Same thing happened to me and I am never depressed let alone suicidal. Nasty, horrible stuff! Should not be allowed to be prescribed!!!

[Daewood1949 in reply to Mafopp5]

Please forgive me for being so obtuse, but I'm from Canada and unfamiliar with the term augmentation-what does that word mean ?

[Fingerandus]

hi i saw a neurologist he did all my tests couldnt tell me why my legs and arms jumped ached drove me mad at night just said i will report to your doctor then suggested i up my dose of pramipexole dont touch it its a terrible drug xx