Letter from G.P.

[bedith6]

After I told you I had written a letter to the G.P. listing all my symptoms ( which was really difficult) I had a note from him asking for my permission to approach a Neuro consultant on my behalf and to instigate further tests. He says my symptoms are atypical which I think is nonsense because they are not but I think he doesn't know an awful lot about RLS. When I have an appointment with the Neuro consultant what sort of things can I expect? Hope tonight is a good one for all.

[beady3]

Just like to tell you my story. My doc didn't know much about rls either she used to ask me what I had found out and that how I went on. Then went to nuro he was supposed to be very good, he asked what the pain felt like how often it happened ,if I walked about did that stop it answer no ,he said he thought he might have a few roads we could go down all pathetic. That's when my doc put me on Tramodol Bliss. Beady 3

[Hidden]

Hi Bedith, Glad your GP seems to be finally taking your symptoms seriously .Are you just going for a consultation with a Neurologist to discuss your symptoms or are you actually booked in for some specific tests? X

[bedith6 in reply to Hidden]

Hi P1pp1ns No I havn't an appt. yet. The note from the G.P was simply to ask for my permission for him to approach a neurologist on my behalf. Naturally I have given permission and am now waiting to see what happens. In the meantime I'm just taking Temazepam but have had to increase the strength to 20mgsX

[Hidden in reply to bedith6]

Hi Bedith, When you go for your appointment if its just for a first consultation the Neurologist will probably ask you lots of questions. I was asked when my symptoms started, which treatments I had tried and any side effects, what my symptoms are , if anything helps or makes it worse, that sort of thing.It is not always easy to remember it all so best to make a few notes to jog your memory.If possible take someone with you to the appointment as I find I only remember half of what I am told! Tell the Neurologist the effects restless legs has on your life and sleep.Maybe look at the post showing the rls criteria and take a copy of that with you.Sadly even some Neuros dont know very much about rls!

If the consultant wants to double check your diagnosis he may decide to book you in for some tests such as nerve conduction tests and blood tests.Make sure you get him or your GP to test your ferratin iron as this needs to be over 70 for rls sufferers.He may organise scans etc.

Be prepared for your appointment with as much information as you can get together to make the most of your time- you have been struggling and waiting long enough.Good luck, let us knjow how you go on. Kim x

[bedith6 in reply to Hidden]

Thank you P1pp1n for all that really good advice. Havn't yet heard from G.P. re. appointment, but I guess it will take some time.X

[Hidden in reply to bedith6]

You're welcome Bedith, yes could be a while waiting for appointment, I am still waiting for appt at a movement disorder clinic as the first Neuro I saw specialised in Epilepsy! Tjink that was a mistake on someones part ha ha .Take care x

[Trubs]

The neurologist is definitely the best way to go. I have just been and she was marvellous. Am waiting for some test results and a brain scan begore final diagnosis but am on Mirapexin slow release in the mean time with top of 3 pramipexole 0.088 in the evening if needed (and it is!). Legs are somewhay better but head still nods (yes yes nodding)

[bedith6 in reply to Trubs]

Hi Do you have any side effect issues with these meds? It doesn't seem to matter what I take I always experience side effects except for Temazepam.

[Eileenk in reply to bedith6]

Hi Bedith

Me too...nearly all of the meds made me so nauseous I could hardly get to work. Don't know what's worse...being on meds and feeling sick or up all night..?

[Trubs in reply to bedith6]

I have put on weight, which isn't funny as I am already obese. I was unable to walk for a couple of years, finally got an op. Move about all the time and put on more weight than before the op. Where's the justice in that!

[hazelrobson]

Hi, I have great sympathy with you with regard to GPs. I believe they are having great difficulty in coming to terms with patient's access to information on the Internet. Whilst NHS is promoting patients taking responsibility for their health when you do the GP seems to find it hard when you actually know more than them! There is an arrogance about them. That's been my experience.

I have decided to put together a paper for the GPs at my practice - I'll probably get thrown out! But I am amazed at the lack of knowledge and support. I do not think they realise the total devastation this makes to your life to the point that you end up thinking you cannot take it any more.

My advice would be to communicate with your GP your feelings and continue to be asked to be referred. Do you have a local Sleep Clinic?