Waiting for an appointment

[Hoochybaby]

Does anyone find waiting for an appointment with the NHS as frustrating as I do?

I have been waiting since last November and I had two appointment made which were then changed and then subsequently cancelled " due to unforeseen circumstances " the neurology department and the appointment centre which is just a call centre do not appear to talk to each other. When I phoned the hospital last week I was told I could have an appointment for the 2nd March and then a letter arrived the day after to say I had an appointment made for the 14th May!!!

Trying to contact eather one of these numbers is a long and frustrating amount of time and each time I am left having to hold for ages or being transferred to another dept and then cut off or to be told that they would ring mr back and never do so.

In the meantime time on a positive my insomnia has improved and I no longer take Pramipexole. My rls unfortunately has crept back and weirdly seems to effect my left leg but not my right leg and the rls is starting to start earlier in the day usually mid day. Obviously I don't want to start again on a dopamine agonist it took ages to come off them and the augmentation was severe. If anyone has advice on any treatment may be revelent until I get my neurologist appointment it would be appreciated. Any natural medicine would be preferable at the moment the only thing I use if the rls gets too bad are a couple of paracetamol and olbus and lavender oil.

[Hidden]

Hi Hoochy, I can identify with your frustration.

Relatively speaking to where I live, being referred to a neurologist for RLS in Nov and seeing one in May is not unusual. Last time I asked for a referral, I was advised to see one privately as it would take more than 6 months.

It's not actually the neurologist's fault.

It,'s NOT good that you've had appointments cancelled. If there's any further issue it would be best to contact the hospital Patient Advice and Liaison Service, (PALS).

I also wouldn't expect too much. For me, unless the neurologist is an RLS specialist or has an interest in it, there's not much advantage to seeing one except they can prescribe stuff a GP won't.

Great that you've stopped the pramipexole. How long is it since you last took it? You may still be having some withdrawals and of course, if you're now taking nothing you could expect it to be at least as bad as it was before you started taking anything.

I imagine you've not tried gabapentin again, after new years eve. Have you had a repetition of that experience?

I'd say unless you try again and that happens again, you can't say for sure it was the gabapentin. I also think your experience was frightening, mainly because you'd not experienced it before, but I believe it was harmless.

Less harmless than RLS.

By all means try lavender oil, some people find valerian helpful. You could also try vitamin supplements B12 but particularly D.

Paracetamol with CODEINE is better than just paracetamol. Olbus oil, a stimulant, I woukl avoid it.

[Hoochybaby in reply to Hidden]

Hi Manerva many thanks for the reply. I choose the Sheffield sleep clinic and movement disorder dept when I did some research on the net and found it was the only one within my area that seemed to specilse in rls disorders but being sceptical by nature I’m not expecting too much at least I’m off the da’s and better than I used to be as regards sleep. I will go eventually but I’m not sure how much info to take with me and if they will bother to read it

It’s getting on for two months now since is I stopped Pramipexole and Gabapentin

[Arkangel]

That is so frustrating, same happened to me with our local sleep clinic and then they closed it down altogether! Magnesium spray helps and I take B12 and D3. I hope you find some relief.

[janland]

Hello..yes I can sympathize with you such a lot..

I'm only taking natural remedies at present... always have done apart from paracetamol sometimes.

I agree with the others 2 replies you've had from Arkangel and especially Manerva...who seems to be especially knowledgeable.

I've had restless legs on and off for years..

I sometimes think I've cracked it...but then it returns,..!!

Not sure if its related to diet or weather as well...but I eat pretty much similar food from week to week... usually.. mostly natural health foods...good old fashioned meals

Last few night watching tv...it starts... very jerky legs.... definitely like electric shocks...both legs.. every few seconds or so...

Last few nights I've been woken up by the same thing...the movements are soo bad... woken up and of course... can't sleep because of the movements..

It's quite rare that I can even get to sleep initially..

So my way of coping is to take magnesium tablets..(or food containing)

and iron tablets which doctor has prescribed... during the night..plus usually some milk... chocolate and or banana...it seems to do the trick and my legs settle down after about 20-30 minutes...

So my iron and magnesium dose is half during day and half at night...mabe I should take more vit D 3 as well..?

Hope this helps.?

[Hoochybaby in reply to janland]

Thanks for the info now that I’ve finished with the pramipexole and gabapentin I think I may try iron and magnesium I wouldn’t think it would cause any harm now I’m off the Drugs

[martino]

Delays are endemic in the NHS. I am waiting for letters following an appointment on 12th November last year. A neurologist has rung me twice since then assuring me letters are on the way!

[DicCarlson]

Get your ferritin (iron) levels checked before supplements. A good non constipating iron supplement is Ferrous Bisglycinate Chelate.

[vinnybob777]

Hi, i am still taking pramipexole albeit a very small dose, most of the time i am thinking it does not work, to add insult to injury i also had plantar faciitis in my right foot, gp was not much help on that one either, so, i have tried a plastic bottle of still water frozen, roll your foot backwards and forwards for about 5 mins and then put some voltarol on and a support strap, bingo, plantar gone, restless legs improved to a point where i have now slept through the night for over a week, will it last,,, who knows. good luck with whatever you try. i also find a walk before bed helps as well.