Hey all I would love to hear your views on the result of my visit today. I don't k ow what it is but no one ever let's me speak I was trying to explain what was going in and he kept talking over me!!
The end result was he said to try clonazapam?? Never tried this before I just thought I have to try something I'm really bad with my rls at the moment. Would be interesting to know your thoughts my knowledgeable friends. Am I going round in circles?? Do I need to see a different specialist?? I'm at a loss what to do thank you for any advice.
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I'm so sorry you have been disappointed again. I think you may have been building up your hopes about this appointment.
It's also quite appalling to think how you were apparently treated. I think it simply rude to talk over you, it's disrespectful.
You are particularly unlucky it seems having such unsatisfactory service from both NHS GPs and private specialist.
I can only say that whenever you see a medical doctor, that they will be biased towards prescribing medical treatment. They are not at all holistic.
I can't exactly recall in your case, but I wonder. if any of the doctors you've seen have carried out blood tests for mineral and vitamin deficiency? This is most importantly ferritin, but also vitamins D and B12.
This is the very first thing a doctor should do.
Have you also investigated what factors there are in your case that may be aggravating your RLS?
By all means, the clonazepam is worth a try. I tried it a couple of times, but with no great effect. That may be because I was augmenting at the time.
The blank look in response to the word augmentation tells it all really.
I apologise if this sounds patronising, but I believe when you go to see a doctor you really need to be very clear about what you want. You also need to be clear about what your rights are.
If you think they're going to dispute what you want then have all the evidence available that supports what you want and enables you to challenge what they say, if necessary.
In your case it is clear that the dopamine agonists have failed. It's also clear that you have suffered augmentation. It seems the gabapentin isn't working either.
This then is "refractory" RLS and the medicine licensed for this is a more potent opioid called Targinact.
I understand it's difficult when you talk to some doctors, (luckily not all), they have this aura of authority about them that makes you feel small. In which case it usually helps, (but not always) to be as assertive as you can. Be polite, be calm, but persist. Perhaps rehearse what you want to say. If you feel they're not understanding, repeat yourself. Be preared to keep repeating yourself.
Perhaps make notes about what you want to say and have your evidence available.
It may be better to send the evidence to them beforehand.
Luckily all the evidence you may need is available from the National Institute for Health and Care Excellence.
Don't forget that if you have any concerns about a doctors conduct, NHS or private you can complain to their employer or you can contact the General Medical Council.
Thank for your reply. I did try and be assertive I took the sleep study with me and the sleep diary off the rls website but because of covid I was sat way from him so was a bit awkward. I'm hoping the clozapam works but your right about blood test for vitamin mineral deficiency not had one for this I don't think.?? Its so hard to get help for rls I've tried feels like everything no joy. Told to come off codeine straight away but last night had the worst night so I took 1 instead of 2!! Its all trial and error!! It's hard going this but will keep plodding on 🙏💪
I wonder if you perhaps emphasised the lack of sleep too much? I really don't know, but clonazepam is a sleeping aid rather than something to relieve RLS symptoms.
I apologise if I was giving the impression that I am critical of all doctors. I have had some brilliant GPs for example, but none of them knew much about RLS. That kind of ignorance is understandable.
However when a few particular doctors are apparently arrogant, disrespectful, and in some cases bullying then you need to know your rights.
E.g. doctors are ethically supposed to negotiate your care with you - shared decision making and they are supposed to gain your informed consent to treatment. This is also a legal requirement. When they deny you yuor rights then there are mechanisms for expressing your concerns.
It does seem you have had some difficulties with your doctors which aren't necessarily due to ignorance about RLS. It also means that you are probably feeling that you are not getting the best treatment for your RLS but may be also feeling you are powerless to do anything about it.
I recall you saying that you were in dispute with a GP because they claimed they had referred you to a neurolgist but you actually saw an elderly care specialist, that has nothing to do with a lack of knowledge of RLS.
I also recall thay when you witheld consent for one particular medicine you were told you had "refused treatment". Thatb again has nothiong to with a lack of knowledge about RLS.
I'm sorry yet again you seem to have had a series of disappointments with doctors.
This does not mean that doctors in general are to be criticised.
Hi Manerva,I live in Australia and I can’t seem to access the UK links you have attached above. Excuse my ignorance but are these links available in other forms for those of us living overseas?... Kind regards
Hi, I’m sorry to hear you have been disappointed. I can’t remember which country you are in, but one of the problems is that when you see a specialist, at least in the uk, they expect the basics have been done by a GP. The problem is lack of medical education and prioritising RLS and the fact that most drs have been qualified for some time when even less was known about it & as I’ve said before no one can tune into how truly awful it is without experiencing it themselves - & that includes me as a retired GP with it clearly occurring in my Mum before I got the God awful version.And most treatments aren’t brilliant, especially long term & have their potential risks.
But I don’t think it’s helpful to Dr bash. It’s not their fault we have this any more than it’s their fault if someone has cancer or anything else & they have so many conditions to deal with & most truly do want to help. They don’t do it for kudos or a peaceful lifestyle & now I’m retired I think I have some ptsd from some of the awful things I’ve had to deal with ( as do many emergency workers )
We need to lobby, educate & beg for research.
I think clonazepam is one of the reasonable options though there are downsides, lots of info on the internet. I haven’t yet tried it.
But if you haven’t had all the bloods I’d ask your GP for them & educate him/her about the relevant level of ferritin for RLS
I don’t know your situation or how long you’ve been suffering, but I know about suffering from RLS for almost one and a half years
I won’t give all the details and my treatments
excellent pulmonologist & sleep doctor put me on requip ropinorole in addition to gabapentin already on for diabetic neuropathy
requip worked fine for a coupla months then reversed to requip augmentation that did opposite ie made RLS worse
pulmo said too complicated for him so referred me to an excellent RLS specialist who’s dbl boarded in sleep and neurology
he started me on a cocktail but i don’t remember what all but it worked ie something in the cocktail worked so then he started removing one drug at a time til we got down to one very low dose 5mg methadone daily 15-30 minutes before bedtime
he says of the 2 top RLS centers in the country one favors low dose methadone and the other low dose oxycodone both are opioids one of the two was mayo and i think the second was either johns hopkins or cleveland clinic
i balked about opioids until IN MY CASE ONLY AND NOT NECESSARILY YOURS the 5mg methadone made my RLS magically metaphorically speaking disappear or suppressed it within a few days
ASIDE unfortunately a recent recurrence of prostate cancer has led to an Rx of a powerful antiandrogen which has reversed over a year of success with my RLS and has made it worse than ever
my team for this my PPC my RLS doc my two pain center docs my medl oncologist are working the problem without a lot of success so far
they took the one successful 5mg methadone qhs upped it to 10mg methadone qhs changed it to 5mg oxycodone then upped that to 10mg oxycodone plus changed my gabapentin on which i appear to be fatigued and changed it to 350mg pregabin daily
each change gave me very marginal help and they’re probably going to try medical marijuana next as a hail mary pass.
THIS IS NOT A RECOMMENDATION JUST A SUMMARY OF MY EXPERIENCE FYI
the culprit is the cancer med that screwed the pooch RLS wise
my PERSONAL OPINION is to get an RLS specialist the disease is little understood and treatment can be very complex and art as well as science
i hope this provides some insight from my PERSONAL experience
I’ve had similar with neurologists recently, where they are not even letting me tell them all of them symptoms.
It’s very frustrating and feel your pain.
I wrote a report and asked my GP if he could write to my neurologist and include this.
Jus before I wrote my report, I collapsed and had a heart rate over 200 for a long period. During my hospital admission, they referred me for nerve conduction studies (which i had today).
My GP is waiting for the results before writing to my Neurologist. Sometime putting it to a dr in writing makes it harder for them to ignore.
Thanks for your reply sorry you ended up in hospital. My gps said they don't know enough about rls as they are general practitioners! Yeah I've printed lots of things off and taken with me but bring them back home as no one looked at them 🙄. I had nerve test I cried it felt like rls but 20 times worse but mine came back normal!! I'm waiting now for my new medication from neurologist and see what happens tonight. Good luck hope you r feeling better soon xxx
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