A good Consultant that knows about RLS, Augmentation and things in the UK

[HilsK]

THE REALLY GOOD NEWS

Well all my shouting and rolling around in incredible pain has had an effect on my UK GP practice and at least one consultant at the Royal Stoke hospital in the Midlands.

The whole GP practice is clued up. They have my notes and references, including those in the States. They are aware, awake and prepared to learn more. This has also been cascaded to pharmacists in the area it seems. The excellent listening NHS consultant at Royal Stoke hospital in the Midlands is Dr Johnathan Partridge (Neurology) . He says I still know more than he does!!!! but he is curious and really listens and learns.

THE BAD NEWS

A worrying experience recently occurred with part of the medical team at Leighton Hospital, near Crewe. They caused me to become very ill very quickly. I was admitted after a severe asthma attack related to Covid damage. I ensured the paramedics picked up all my medications. In those medications was Pramipexole.

Once in the hospital, the medical team refused to give me any Pramipexole for over three days. They said they were waiting for their own hospital pharmacy to produce it. This is spite of tablets being in my locker at my bed head.

I explained what was happening to me and tried to get them to read my case file. They couldn't be bothered. Apart from severe asthma, I was in incredible pain, increasing inablility to control my movements, extremely sick, incontinent, drenched in sweat and dizzy .. I was so ill they brought the Dr on call up in the night ... a Cardiac consultant who proceded to give me an ECG, GTN spray and a couple of extra nebulisers for my asthma. I was beyond telling him how ill I was. I did not know where I was and felt as if I was dying ....

My current consultant was horrified and believed they had caused DAWs or even NMS, two syndromes associated with sudden withdrawl of certain drugs, which can really make you ill.

Once they started the pramipexole again .. gradually the whole terrifying feeling subsided .. but it has taken 4 weeks and adding a whole pile of other drugs temporarily to make me stable again ...

If you meet such medics please don't let them mess with your RLS medication. Call them out on it. Do not give way to their excuses.

They are now going to have to answer to me at a hearing.

[Joolsg]

I'm so sorry you encountered such appalling negligence but not in the least surprised. We hear horror stories like this regularly- all due to complete medical ignorance.I hope they apologise and decide to include RLS in their hospital training !

I hope you recover fully from your ordeal.

[Jumpey]

I'm so sorry you suffered in this way.Good luck with the hearing .And well done for all your advocacy in your area.Thank you.x

[rkatt]

That's horrifying, frightening. It's not simply that medics know nothing about RLS - they refuse to be enlightened by patients, or by the simple expedient of looking up the RLS UK website. What a relief you survived. And congratulations x 100 for taking them to a hearing. I like that.