First Neurology Appt.

[Chegs89]

Hi everyone,

I've been for my first neurology appt today and feel even more confused than deflated than before!

The consultant I saw was a really nice man but did really know what to do with me. He said it's quite unheard of for someone of my age (27) to be diagnosed with RLS. Diagnostically I met all of the criteria but he wasn't satisfied because of my age.

I've had a range of blood tests done and now just need to wait for the results. His first plan of action is to possibly start me on a high dose of iron as my feratin levels very quite low. He also plans to do a nerve conduction study and possibly a sleep study in the near future.

I'm not sure what I was expecting from today but I've come away with very little clarity. It just seems that once I get one health issue sorted something else crops up and needs sorting...each one more complicated than the last!

Thankfully he was reluctant to just increase my Pramipexole, mainly because of my age and said he would rather try everything else before doing that!

Has anyone else had a similar experience to this? It'd be great to get some advice or share stories on this.

[Madlegs1]

Another numpty neurologist!

At least he didn't do harm.

I'm too cross to go on- will leave that for others.

Sorry- I'm suffering after effects of dentist trip.

[Joolsg]

I really don't know what to say. Yet another ignorant neurologist. How can he say it's unheard of for someone of your age to have RLS? He just needs to spend 10 mins on this site and he'll find lots of people with RLS at a young age. Sigh...in frustration.

At least he wants to investigate further and if your serum ferritin is low he's doing the right thing getting that higher. Let's hope the sleep study and increased iron help.

jools

[Chegs89 in reply to Joolsg]

He was really nice about it all and did say he wouldn't commit to do anything until he had done some research in treating younger patients.

I did try to tell him about this site and others that I've been accessing so hopefully he'll maybe have a look in to those things rather than just going straight to text books. Text books are good to a certain extent but nowhere near comprehensive enough as people!

[Pluto46 in reply to Joolsg]

Agree completely about the age thing. Back in the sixties when I was 18-ish, a doctor told me it was growing pains. Now, 52 years later, it seems I'm still growing.

Chris

[Joolsg]

I absolutely agree. I have learnt so much about RLS and treatment options from the wonderful people on this site. They really do know more about the condition and how to treat it than the vast majority of GPs and most neurologists as well ( except those who specialise in movement disorders).

Stay positive and I'm sure getting your serum ferritin levels higher will improve your condition. Maybe email your neurologist and tell him about the Channel 5 programme on RLS to be broadcast at 10pm on 4th April. Not sure what it will cover, but might mention RLS in younger people ( particularly those with primary, genetic RLS).

Take care,

[Kaarina Administrator in reply to Joolsg]

What a brilliant idea, Joolsg, to suggest that Chegs89 let's the neurologist he saw today know about the Channel 5 Programme on RLS.

[Joolsg in reply to Kaarina]

Hi Kaarina,

I saw a neurologist at King's hospital, London on Friday and told her about the programme. She wrote down the details, so hopefully will tune in. I've also emailed my GP (doubt she'll watch it) and my MS nurse to tell her and the team at St George's, Tooting about the programme.

Fingers crossed,

Jools

[Kaarina Administrator in reply to Joolsg]

Hi Jools, that was a grand idea to let these three people know about the programme. We cannot make people watch it but at least you know that you have done your best by giving them the details.

Thank you.

[Kaarina Administrator in reply to Kaarina]

Hi Jools, I have just emailed my surgery with the programme details.

[Hidden]

I echo on what the others have said. I hope your neuro looks in the right places for info. Even young babies can suffer with RLS, i have seen mum's video their babes trying to sleep and you can see the distress as they start to move their limbs because they have to.

[Spudellen]

Rubbish! I have had RLS since I was 14 years old. Going to the movies was murder because I couldn't keep my legs still. At least you numbnuts didn't increase your pramipexole. Not an unusual post though.

[Bganim1947 in reply to Spudellen]

Anyone know if the UK RLS program will be shown in the US?

[Cupcake1971]

Oh my 1st appt with Neurologist isnt until July, i have been on pramipexole for nearly a year and was hoping to get the dose increased as my GP cant increase it, is it not a good idea to increase ? It worked well in the beginning but now my legs are driving me bonkers !! My 18 year old daughter has also been suffering with RLS and GP has put her on Vit D.

[Joolsg in reply to Cupcake1971]

Look up augmentation in the search box. If the pramipexole is not as effective any more you could be augmenting.

Jools

[Kaarina Administrator in reply to Cupcake1971]

Hi Cupcake1971,

I attach a link on augmentation which may help you: sleepreviewmag.com/2015/02/...

[Jeanniebeannie]

Hi. ive had rls all my life. Now have primary rls. But as a child was always told off for not being at peace .didnt know why i culdnt be at peace just knew my legs had an urge to move .but now know what it was. So have had rls all my life .was checked for iron so dont need it. but at times feel that is life worth living with this and other times not too bad .but i avoid taking more pramipexole as later on you need more yet again. I get up when im bad and wait and wait till it passes .but been been bad at times that you think is there an easy way out . But you have to keep going nothing else for it .

[Chegs89 in reply to Jeanniebeannie]

The consultant was quite reluctant to increase my Pramipexole because of my age, so thankfully he's not just looking to pump me full of meds.

I've been on a lot of medication throughout my life so do not want to be relying on meds until I definitely need to!

[marsha2306 in reply to Jeanniebeannie]

You say your iron levels are ok but are they ok for a person with RLS or a "normal" person. My specialist in RLS and other sleep disorders says the ferritin level needs to be 100 or above for us sufferers. And just to put an extra note on this, since I have gone to him my RLS is totally totally under control.

[marsha2306 in reply to marsha2306]

My previous reply was for jeanniebeannie

[Jeanniebeannie in reply to marsha2306]

Well thats good . you mayb just have it mild . But whatever the reason it comes and goes i dont know. Happy days.

[Kaarina Administrator in reply to marsha2306]

That is brilliant news that your RLS is totally under control, Grammie12.

[marsha2306]

I know!!! The doc was so happy to see me so upbeat!

[Kaarina Administrator in reply to marsha2306]

Yeah! Will make the specialists day too I should think!

[Igiveupxyz]

Many, many of us will agree that being 27 doesn't rule out RLS. A fair number of us realize that we've had it since childhood but attributed it to growing pains. Good luck...if I had a solution, I would share.

With the help of a neurologist I really like, I just weaned myself off ropinerole as I hated the side effects (rapid weight gain of 40 pounds) of the generic and my insurance company refused to let me take the brand name Requip XL. Have to say, I'm happier not taking anything

[Amy96]

Im 20 & i have RLS , i was diagnosed with RLS at my first neurology app & age never came up.

[Retren]

I can,t imagine why your consultant informed you he had never heard of a 27 year old with restless leg there are infants with it it does not discriminate with age groups.There should be tutorials to enlighten the medical world.

[Amy96]

Iam 20 years old and i have recently been diagnosed with RLS (secondary).

[Hidden in reply to Amy96]

Amy, what makes you think you have secondary rls. ? Usually when someone has RLS start at a younger age, it usually means they have inherited the gene from a parent, which means Primary RLS. Secondary RLS, is from having a underlying condition. You do NEED to ask what your ferritin level number is.