Appointment today update

[Netball-50]

I have to write a post as I am so so angry after my appointment today.

It took me nearly an hour to get there and I've waited ages for this appointment.

Well I arrived and he introduced himself. He said according to my records I've all the tests that I should have had as there is a trigger for RLS!! He also said I told them I wouldn't take ropinerole as I explained why as per my posts on here as I'd augmentated and wasnt going to put myself put through that again. He said because I'm on sertraline and I'm not sleeping well this could be making it worse!! Wot rubbish. I weaned off sertraline and my rls was still the same!! Yeah I've read on here anti depressants don't help but the sleep deprivation is because of the twitching. I told him I'd researched this condition and of this wonderful forum and the advice I'd got from you all.

The gem was about to come. He told me that he wasn't going to prescribe anything other than standard medication ropinerole and that did I know buprenophine is morphine I said yes I know that!! Then he told me the best bit. He told me that the last Dr I saw wasn't a neurologist I asked what he was he said the same as me a Dr in geriatric medicine so I said so I havnt seen a neurologist he said no I was in total shock!! He said I wondered why you had come to see me at your age!! He is now referring me to a neurologist. I asked if they r based at my local trust he said yes there's 4 of them I raised my voice by this time and said so I havnt seen 1 yet he said no!!! UNBELIEVABLE I am so fuming and angry I can't tell you. I couldn't wait to tell u all on here I'm at a total loss. another wait I'm losing faith I can tell you. 😩

[Madlegs1]

So sorry for your experience.I hope the next appointment will be better.

You have worked so hard to get to this point, and to have such disappointment.

Will you be able to hurry up the wait?

Good luck.

[rls-insomniac in reply to Madlegs1]

Oh my goodness, I'm appalled with your experience. A few months ago, I was having a terrible time with my RLS. Because of the pandemic, I couldn't see my consultant. After emailing him several times in absolute desperation, crying down the phone when speaking with his secretary, I still didn't hear anything from him. The NHS hospital had a PALS service. This is a Patient Advice and Liaison Service. One of their areas is dealing with patient complaints. I spoke to one of their advisors in detail, explained what had happened and the appalling way I felt I had been treated. They asked to see copies of my correspondence and to provide an outline of what happened, which I emailed over to them. I went down the informal complaint route. Within a few days of providing all this to PALS, I received a phone call, out of the blue from my consultant and we sorted things out. No apology from him, I would add! It may be worth your while enquiring whether the hospital you went to has a PALS service, although I believe that most of them do. I would suggest that you explain what has happened to you and request that you see a neurologist who is an expert in treating RLS forthwith or you will take the matter further.

It helped me no end. In fact when I wrote to my consultant about 5 weeks ago setting out my case for trying Temgesic, I received a response from him within a few days! He agreed to me trying it. It's been wonderful. I rarely get RLS symptoms and when I do, they are much milder than before. I am still taking pregabalin, but I have managed to reduce it to 200mgs instead of 300mgs.

I just feel that nowadays, if you don't make a bit of a fuss, you just seem to get ignored!

[LotteM in reply to rls-insomniac]

Good idea and well done persevering about the PALS. Sounds like a good plan for you too, Netball.

[Netball-50 in reply to rls-insomniac]

Thank you so much that's a good idea I'm getting the run around don't know why I'm geriatric medicine when I need a specialist in rls like u say its so hard I even thought about going private but would need a win on the lottery for that lol thanks though I'm going to look into that I really don't know who takes u seriously about RLS my GP actually admitted she didn't know much about it!! And referred me to what I thought was a neurologist what a joke at my expense. I don't know what I'd do without this forum honestly don't. When I told today's Dr I'd researched it he looked at me in disgust as if oh no another self diagnoser!! I'm baffled with it all. BTW when I had a knee op last year they said I was sensitive to morphine so what would be an alternative anyone??

[rls-insomniac in reply to Netball-50]

It would seem that there has been a cock up somewhere along the line. Possibly your GP, who knows nothing about RLS thought that was the right area of expertise for you!! Mmmm!! 😱. When I was referred, it was to a Sleep Clinic not a neurologist. I did a bit of detective work and checked who the consultants were at the Sleep Clinic. via the hospital's website. I then looked up each consultant's area of expertise and then found one who had an interest in RLS. I then spoke with my GP and requested that they refer me to that particular consultant. I also rang the Sleep Clinic and asked the same. Some hospital websites may not provide details of the areas of expertise but I would ring the hospital department in question and try and find out. I said that there would be no point in being seen by a consultant who didn't know how to treat someone who is suffering with severe RLS.

Out of interest have you tried gabapentin or pregabalin? I was taking pregabalin 300mgs, Targinact 10mgs and Tramadol 100mgs. This combination did help with the sleep but I still suffered with RLS in the afternoons and evenings, albeit not as severely as when I was withdrawing from ropinirole.

[Netball-50 in reply to rls-insomniac]

Hi this is good advice are u in the UK?? Where would I start to ring round? I will ring pals they might know who to ring? Is it the trust? I don't have a consultant apparently as I've been sent to geriatric medicine so would I ring neurology department I'm not sure which sleep clinic they use in our Trust either?? Minefield comes to mind but thanks for the advice will do something I'm so angry thanks 😠

[rls-insomniac in reply to Netball-50]

I'd still be fuming too. Yes I am in the UK. I'll PM you a bit later if that's okay. Dog walking duties and all that! 😊.

[Netball-50 in reply to Madlegs1]

No I don't think so it's the NHS!!

[Hidden]

Very sad to hear this. I can appreciate your anger.

I wonder how it is that you've not seen a neurologist. Who was supposrd to have referred you? Your GP?

[Netball-50 in reply to Hidden]

Yes I saw who I thought was a neurologist but turns out he wasn't from today's visit which he informed me I havnt seen 1 at all he didn't know how I've ended up in geriatric medicine words fail me 🙁

[cumoneileen in reply to Netball-50]

Not been on forum for a long time. I have had restless legs since I was 20 the older i got the worse RLS got I have seen every one possible neurological included, there seems to be no cure. No one has answers I am now 76 taking Pramipexole and pain killers. Doctors are as baffled now as they were back in the 60s good luck

[Netball-50 in reply to cumoneileen]

Yeah looks like no one k ows if it wasn't for this forum I'd b stuck what to do I'll keep on fighting. 🙄

[Hidden in reply to cumoneileen]

Sad to hear you've suffered RLS for so long.

Quite a lot has been learned about RLS in the last 30 years or so, Unfortunately, this learning doesn't seem to have reached the doctors who intially deal with it. There is a lot of ignoramce.

There's also possibly a lot of people whose treatment began 15 - 20 years ago, who have simply been left on the same medication and haven't benefitted from developments in that time.

It is true, there is no cure available, only things that can relieve the symptoms.

I note you're taking painkillers and pramipexole.

Painkillers, in general, are of little use for RLS. However, opioids are. So if the painkiller you're taking is an opioid then it may be helping, otherwise not.

Pramipexole, a dopamine agonist, is no longer recommended as a first treatment for RLS. This doesn't seem to have reached many doctors yet who are still apparently prescribing one. This is because of the risk of complications, augmentation, loss of efficacy and impulse control disorder.

Hopefully whoever is prescribing you pramipexole has made you aware of these complications.

If you've been taking pramipexole for some years you may be experiencing loss of efficacy, ( it stops working), or even augmentation, (it gets worse). This is especially likely if you're taking more than 0.25mg.

Hopefully at some time you've also had blood tests for ferritin and haemoglobin. If your haemoglobin is low then you may have anaemia. Even if it's OK if your ferritin is less than 75ug/L then your RLS may benefit from taking an oral iron supplment.

Iron therapy is a well proven treatment for 50 - 60% of RLS sufferers.

In addition, if you're on any other medications for any other health problem, then there are quite a lot of other medicines which are known to make RLS worse.

[cumoneileen in reply to Hidden]

Thank you for your email Minera. All these years all ivestigations no one is any the wiser. My pain killers are opeaits. I was supposed to have had a hip replacement in May due to pandemic cancelled, I am in the most excruciating pain. When my RLS kicks in pure agony.

[Hidden in reply to cumoneileen]

Sorry to hear that. It does seem the pramipexole is not working.

[Netball-50 in reply to Hidden]

Hi manerva no I take gabapentin I weaned off pramipexole about 10 months ago now take 2 gaba x300 mgs at t time and then x 2 300 mgs at bedtime with x2 Co codamol 30/500 my last ferritin blood test was 99 they said. I've got my list today of neurologists in my local trust good job I work in NHS although don't get priority for anything but wouldn't expect to lol xxx

[Hidden in reply to Netball-50]

Misundertsanding, - my reply about pramipexole not working was to cumoneilleen not yourself.

Good luck with the neurologist.

[Netball-50 in reply to Hidden]

Apologies my mistake

[Hidden in reply to Netball-50]

No problem

[LotteM]

Unbelievable! As if with a broken bone you would be connected to a nephrologist. Or cardiologist. Etc. How on earth do we make people take RLS seriously?

[Netball-50 in reply to LotteM]

I know I was prepared I wrote my RLS journey at the weekend and it made me upset to read it back I know some people r worse than me but it was still sad to read how I'm trying to get help and getting no where 😢

[RLSBecca]

I feel your pain. That is absolutely awful!!!

[Munroist]

Well done for persevering and taking responsibility for your health. It sounds like you may now be seen by a neurologist as there are 4 in your trust so as people have said try to ask for one with RLS experience. Trust websites often have information on their departments and consultant teams so you may be able to find a preferred name. Try not to get too angry as it’s unlikely to help you personally although I can fully understand the deep frustration after what you’ve been through.

[Kaarina Administrator]

Hi Netball,

Some members have posted on here in the past, that they were at last listened to by a neurologist or consultant who had an interest in RLS. As a result, I have a tiny list. If you would like to PM me and let me know where in the UK you are, I can see if anyone has recommended someone near or fairly near to you.

[Lunawildwolf]

When I was referred to see a neurologist I was told I'd have a 12 - 18 month wait. As i was desperate to find out what was wrong with me, I paid to go private. Got my diagnosis of RLS and PLMD and also had an mri scan to rule out m.s.

I would have gone mad, if I'd waited any longer for diagnosis and treatment.

[Ranjits]

Last night I took zopicione tablets first time which my doc prescribed after I copmplain about constipation with co -codamol after taking zopicione My legs was burning like any thing I was running around in house for desparation called nhs helpline they said have Co codamol to Kalm myself has any body else took this sleeping tablets before please let me know that was worse rls in my whole life

[Elaniemarie]

I so sympathise! And "at your age?" What does that mean for heaven sake! It gets worse as you age, as most of us know! I personally found Sertraline made me worse ie I was restless all over then.aghhh! Taking Dihydrocodeine makes me itch especially at night! Another way to have insomnia! I suggest a change of GP may be good. I am thinking of it myself. It astounds me that so little is known about this wretched condition by the medical profession, it's been around for long enough!!! The fact that it occurs only down one side at any time is a big clue. It comes from the central nervous system according to research so far. A tricky thing to mess with. Sorry to rant!