Neurologist appointment

[Elsie77]

I had my first neurologist’s appointment yesterday, I live in the Uk and the Hospital was Leicester General. My GP had written the referral explaining I had needed to see a specialist in this field. I saw a registrar who explained that she wasn’t a specialist in RLS but her boss knew more than her. After discussing my history and the medication I had taken , Pramipexole 0.088mg then 0.18mg before augmenting and now taking Gabapentin, she didn’t understand why I was splitting my doses to 600mg 2 hours apart, she had never heard of that! I was even more astounded when she then proposed that the next stage was going to be to go back on Pramipexole but at a much higher dose. When I refused to take Pramipexole she wanted to know why I was so adamant, I had to explain the problems with this suggestion!! Her next question was well what do you want to do next? I suggested moving on to Pregabalin as the side effects of Gabapentin were hard to deal with, my gp had said he would prescribe it but had insisted I would need to gradually reduce GABA to nothing before I built up to the appropriate dose with pregabalin, despite me sending a link from the main dispensary for UK NHS which says that a direct swap can be made providing the GABA dose is divided by 6 for Pregabalin. She agreed to write that on the letter she would be sending to him - the only benefit of this consultation. I went with low expectations but I never expected such woefully poor and possibly dangerous suggestions. If anyone in the Uk has got an appointment with a Neurologist I would suggest that you go pre-armed with as much information as possible, be prepared to question any decisions they make.

[SueJohnson]

Unbelievable !

[Madlegs1 in reply to SueJohnson]

Plus one by thousands!😥

[Joolsg]

Why am I not surprised? It's disgraceful.

[Joolsg]

ncbi.nlm.nih.gov/pmc/articl...

I suggest you send this paper to the doctor you saw. It explains why doses of gabapentin above 600mg are poorly absorbed and why the Mayo Algorithm advises splitting the dose above 600mg.

If they won't do the research, we have to educate them.

It certainly makes one question the phrase 'Trust me, I'm a doctor."

And as for increasing Pramipexole dose when augmentation has kicked in. Wow.

We have such an uphill battle to educate the medical profession.

[Tanker1 in reply to Joolsg]

Always question authority. Especially when it involves your health.

[Simkin]

Gosh Elsie. Useful to know. Thanks. As I have mentioned before I have had far more help from Sue, Jools & others on this site than any neurologist or GP in the UK.Also the RLS Society have always been extremely helpful & supportive.

[67Waterman]

One "RLS Specialist" at Queens Square Neurology Hospital told me to stop drinking coffee - "that cures 60% to 70% of his patients".

I had to wait a year to see Professor Walker at the same hospital, and it really was me telling him what I was on (thanks to this Forum and the Mayo Clinic Algorithm) and for his to say "that is fine". No other advice. I have to wait another year to get a follow up appointment.

All rather pointless really.

Which is why this Forum and people like Jools, Sue and others are life savers. And we thank them from the bottom of our hearts for continually showing up here, answering the same questions week in week out, with a devotion to helping people that is amazing.

[SueJohnson in reply to 67Waterman]

Interestingly coffee helps some people with RLS.

[GaryHB]

So sorry to hear your distressing story. I think it would be fair to say we all sympathise! Thankfully this forum offers such support - it is an enormous help speaking with people who understand! I was at my GP this week and asked if he would give me a trial of Buprenorphine. He refused. I shared with him what I had learned from this form and he said, 'the problem with these forums is they are unscientific'. I told him I was concerned about taking Kratom (which is the only thing working for me) and Trazadone as they interact with one another. He made no comment and offered no advice and I left feeling like his attitude was, 'well you didn't want any of the meds we suggested (none of them worked) so you are on your own then!' I think my experience is far from unique - sadly it seems we all face the same dramas!

[Chelle1981uk]

Sorry to hear this. We are also based in the UK and my mum’s neurologist is in Newcastle. The amount of times WE have suggested things to him is laughable. We’ve searched the internet for aids/equipment/medication to help with my mum’s CBD. We are in despair sometimes because we truly believe he is hopeless!!

[SaltyUK in reply to Chelle1981uk]

Sorry to hear about your experience. I'm in Newcastle too so I'm disapointed to hear about this.

[Bean49]

I came off ropinoroleafter augmentation, on to gabapentin but unfortunately that did not work for me either so I went to my GP armed with information gathered from this forum. I was fortunate enough to speak to a doctor who admitted I knew more than him and put me on 200 mcg pregabalin, he also put me down to see a neurologist from Salford. I had to wait 3-4 years ( admittedly COVID got in the way) and in the meantime the surgery were reluctant to up my dose so I struggled. When I eventually got to see the neurologist she sent a letter to the GP surgery suggesting I could take 600mcg at intervals. I don't need anything like that amount so I now take 150mcg at 8.30 and 100mcg plus 2 cocodomal at 10pm which works well for me. I also am very grateful to the people on this forum who work so hard to help we restless leg sufferers. Thank you all.