I have travelled from Australia to John hopkins centre USA

[Shumbah]

I have suffered from RSL since childhood

It became extremely severe 27 years ago during late stages of pregnancy

Stage one treatment

Panadiene extra once a night was what help for the last 26 years and then all of a sudden as I inch towards 57 it has become much worse .

Stage 2 treatment

2 panadiene Forte 30 mg twice nightly

Plus

2 Normison 10 mg twice nightly

Whist this definitely helps it does not always hold

JOHN HOPKINS appears to be the only group in the world specialising in RSL

Labs - sleep study done . On a relatively good night 48 RSL Moves per Hour

I have already tried an iron infusion

They have recommended gabapentin as first line treatment . It does not go via the liver and not nasty like the Parkinson’s drugs .( so they say )

She said if it does not work she has 2 more tablets in the same family

If they don’t work , then low dose methadone which is not conducive to all our international travel

What I found that helps

Heat packs

Turbulent aeroplane flights I need no drugs at all ( weird I no )

Codiene

Morphine

Cbd with Thc

Or a puff of marijuana

I have not tried edibles how ever I have had doctors suggest it .

[Taylor44]

Hello. I just found this form yesterday. I ended up in the emergency room at Johns Hopkins hospital two days ago for my symptoms. I have been dealing with the symptoms for about 2 weeks. I had the numb tingly creepy crawly itchy feelings under my legs and is progressing to my arms. My primary care physician and for other doctors had no idea what was going on with me. When I went to the emergency room at Johns Hopkins I was told that I probably restless leg syndrome. How was your care at Johns Hopkins. the other doctors that I've seen and including my primary care physician all seem to brush it off as if it's nothing. Healthcare in this country is crazy and I feel like I'm in healthcare Land trying to navigate the system. Any advice that you have would be greatly appreciate it and I hope you have success at Johns Hopkins

[Shumbah in reply to Taylor44]

Dr Sally Elizabeth Benjamin at the sleep study centre . Yes they take is serious .

This is a real disease and needs treatment.

They have recommended gabapentin if does not work 2 others up there sleeve . If still no good methadone which definitely works .

I reckon Pot a though my thing works well if you are not driving etc .

[Taylor44 in reply to Shumbah]

That good news. I was at the outpatient clinic yesterday and still did not get to see a neurologist. So now I have to wait for someone from the neurology clinic to give me a call back to schedule the appointment to see them so that I can get an official diagnosis. Even though I'm presenting with the symptoms. So now I'm just waiting. Thanks for the information

[marsha2306 in reply to Shumbah]

I’ve been seeing Dr. Earley at Hopkins for almost 3 years. The iron infusion to up my ferritin level only helped for a short while. I’ve been on gabapentin and it’s success really depends on the timing of when I take it. A few hours before bedtime to give it time to absorb works best for me.

[Hidden]

Great to hear you got some help from John Hopkins.

I'm surprised you managed so long only taking paracetamol and codeine for your RLS.

Paracetamol is probably useless for RLS and the strength of codeine in over the counter medicines isn't enough.

Similarly benzodiazepines (Normison) are useful for promoting sleep, for a while, but not of much value for RLS symptoms on their own.

It is a shame that you had to travel soi far to get help. It's fairly well known that the first line treatment for RLS is either a Dopamine Agonist (the nasty one) or an alpha 2 ligand (Gabapentin).

Good though that John Hopkins, unlike the neurologist who prescribed me a dapamine agonist 12 years ago, know how nasty dopamine agonists can be.

Hope the Gabapentin works for you.

[craigm1114]

Keep trying. Ropinerole (6mgs) nite helps me & helps me sleep. I also use 4% lidocaine cream (Anecaine) which helps with the pain side. Keep on keepin’ on. If something is not working make sure you make them try something else. It’s your pain not theirs.

[Hidden in reply to craigm1114]

Craigm that is a worrying amount of Ropinerole you are taking , way above what is now recommended, and the "old" dosage is only 4mgs. You need to read about Augmentation taking dopamine meds, there should be a pinned post which explains it all, if you dont know about augmentation.