Appointment fail

I went to a neurologist at St Mary's Hospital, London, on Wednesday. She confessed her ignorance of rls, and stated my wife – who came with me for support – and I were the experts, then blocked everything we said, allowing no time for thought, demonstrating no capacity to listen. We were diplomatic as advised by HeathUnlocked members. When I mooted that Tramadol had helped me to an amazing degree she insisted she would instruct my GP - who's helpful but cautious - to prescribe dopamine agonists. She was insecure, shrill and narcissistic. She stated airily that this whole thing wasn't her bag and she'd refer me to a movement specialist with a wait of six months. Tax payers money went into her education and goes into her LARGE salary. I want my contribution back. I might initiate a procedure against her. We can’t allow our lives to be messed by fools, can we?

37 Replies

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  • Oh no rkatt I am so sorry (but not shocked ) that your appointment was so diabolical! !! What a shame, you wait for an appointment and get what Nightdancer calls a RLS snob lol. The first Neurologist I saw told me she specialised in epilepsy and I had been referred to her after being admitted due to severe sleep deprivation! ! Although she was empathetic and actually listened. So now you wait again, could you afford a private appointment? Will the movement clinic be at the same hospital? As you are London could you get referred to the Movement Disorders clinic run by Dr,Chauduri? Mind you the wait for that is looooong. What has your GP tried you on so far?Will he not give you Tramadol? Take care. ..Pippins2 x

  • Meant to say Dr Chauduri clinic is at King's College Hospital

  • Thanks Pippins. Your appointment and mine demonstrate the NHS wasting their own time and money as well as ours. My GP is now very sympathetic, wants to prescribe Tramadol, but feels she dare not without say-so from above. She recently prescribed Gabapentin, which cut out nerve shocks and convulsions, but not the incessant spasms. The movement clinic will be somewhere else, but I may not go because, yes, I've decided to look for a private doc. A friend has private treatment and says the difference is extraordinary. She's prescribed Tramadol for physical pain, which comes and goes. Her doc has no qualms. She's taken T. for ages and isn't addicted. I'm going to make enquiries about Dr C this morning. Best wishes!

  • Daniel, that's brilliant. My son is getting married in a country outside the UK in July. We're going for a week and my rls could shred the entire experience for me. Could you let me know this doctor's details?

    Thanks and thanks again!

  • Hi Daniel, l take Clonazepam, l try to get by with half a tablet as it makes me so sleepy well into the next day. It does help tho and I can cope if the symptoms are not to bad, it it doesn't work then I will take the other half. Needless to say l am waiting to see if it is going to work tonight. I also try the stretching exercises but l use the foetal position and that also helps.

  • Hi Rkatt, I am very sorry about your appointment. I am very interested in you not only getting relief but getting an exact diagnosis. I have a feeling you did not get my last private message. Call it a hunch, but I think there is more to your condition than RLS. My last message to you included an article about b12 deficiency, which can also lead to anemia. I hope and pray that you have your b12 and iron levels checked.

  • Thanks so much. Yes, I have been getting your messages. Sorry if I haven't replied to all. I've had my vit b12 checked, it was down, and I get top-up shots every three months. Have had blood tests and the whole malarkey. No diabetes, no underlying conditions that the medicos can discover. I'll keep you updated if anything happens.

  • I'm not a doctor but I believe that if they're giving you b12 shots four times a year you are severely deficient. In the US if your b12 is low they send you home with the word B12 written on a piece of paper and tell you to go to a drug store and buy it and take as directed on the bottle. Severe b12 deficiency can lead to what is known as L Hermitte's sign (spelled something like that) which is basically those electrocution zaps you are getting and is why I essentially begged you to be tested. The body heals slowly. Severe b12 deficiency can cause temporary nerve damage as well as poor iron absorption. I predict a complete recovery. It has aggravated the living crap out of your RLS. Magnesium, taurine, of course b12, zinc and iron are supposedly the great nerve healers. You must not take my word for anything and do your own research. You might see MS come up but I guarantee you that is not your problem. Well I feel a lot better about you :)

  • "Hidden" how is it you are still here?

  • So sorry to hear of your horrible experience. Very frustrating. A complaint to some medical council shouldn't be out of place. I expect that will go nowhere except into the quicksand of professional protectionism - but at least you may have some feeling of satisfaction at at least doing something.

    As has been already advised perhaps you could find a more sympathetic Doctor who would prescribe Tramadol.

    I really feel for you in your disappointment and frustration.

  • Thanks Madlegs. Frustrating indeed. I'm sure you're right about professional protectionism, but yes, it would make me feel a lot better. (My wife and I felt shocked afterwards, rattled, unable to concentrate on our work throughout the rest of the day.) Another consideration is that the medical establishment may become less complacent and arrogant if they realise we can hit back. For example, if I take the dopamine boosters and get severe augmentation I'll get a no-win-no-fee lawyer on the case. To apply pressure if nothing else.

    Thanks so much for your support! It helps. It's really good to have HealthUnlocked beside me. I've felt bitter and dreadful since Wednesday.

  • I am so sorry. See if you can persuade your doc to give you Tramadol as well as any dopamine agonists. Stress that you are in pain otherwise I don't think the doc will agree. Some are most reluctant to give out opioids. Can you try the private route! It is costly!

  • Having looked at the other replies I see that you have had excellent advice from others. I should have woken up and read them before I replied. Best wishes!

  • B**tards! F***ing B**tards! Sorry guys but I have had it up to my ears with Drs that don't/wont listen who can't/wont do their job and leave us sitting suicidal in agony for want of a little reading!

    Put in a complaint TODAY do not leave it to cool this woman not only has left you untreated, (imagine taking your car to a garage and them telling you the brakes are shot but refusing to fix them THEN charging you for it too!!). Complaints must be in within 6 months.

    I had an appointment with a pain Dr the referral took 54 weeks instead of 24 and he did not let me speak and told me exercises, pain drugs and anything else I would try for pain wouldn't work and then said I was depressed and referred me to CBT, (the assessment was cancelled half way through as the therapist knew I wasn't depressed).

    I put in a complaint and I am now seeing someone else and I am not going to go quietly any more. These people are paid by US to serve US. If they don't know their job then either employ someone who does or go f**king read a research paper or two. My GP is flummoxed with me s I have a few awkward conditions, (RLS & ME together have him confused) but he has gone off and read and given me details of where he gets his knowledge and what he basis his decisions on. I do not agree with all the treatment modalities but I accept he has at least bothered himself to read.

    Please don't tell me that you would walk into any business and accept I don't know as an answer to a problem so why do it with a Dr - we can all see they do not even have the knowledge they require to perform their role adequately a lot of the time. As long as we tolerate this we will get shafted. There is a ethos in the NHS to pass it on and take no responsibility for anything, (believe me I have many friends who work in it and they all say the same be they OT, SW, nurse or Dr!).

    The neurologist knows the drugs you NEED can be misused and it could come back to her if you are popping Tramadol like Smarties and she wants the GP to catch that one.

    I am so sorry you met that woman but please do not accept such an insult. I didn't, (although it took me 6 months to get my head around the embarrassment and frustration so I could put pen to paper), and I now have another chance to avoid this suffering.

    Good luck.

  • Thanks so much raffs. My sentiments exactly, and perfectly expressed in my opinion. 54 weeks! That genuinely is grotesque, not to mention what happened next. Makes me giddy to think about it. That's very interesting about the ethos in the NHS. We have to fight for our health these days. Your attitude is exactly what's needed. Under pressure your doc educated himself - that's terrific, and how things should be: Dr and patient working together as equals. I would love it if that became the norm.

  • I don't think I could be closer to the edge than I was at that time. Mentally and physically I was on my last legs and as an atheist I found it funny in a way I was praying to die, (not a fan of suicide as I've seen the damage it causes), as I was struggling to deal with it all. Thinking about it now causes a lot of anxiety!!!

    I am quite anxious at the moment with a pain clinic appointment looming and no faith that anything will be done. I will go armed with knowledge and defiance, (although need to make sure the Dr feels in control and I am subservient as there is normally a HUGE ego lurking behind that smile).

    I know,, between my own knowledge, what I have learned from reading on the net and from the great people here on HU that I could if allowed treat myself and yes using powerful opioid drugs in a very strict manner allowing me to function and function well and not to cause other problems like addiction - (I know I would be dependant on the drugs but that is a world away from addiction - a diabetic is dependant on insulin but would not be viewed as addicted) and tolerance, (drug holidays as bad as they would be would allow tolerance to decrease and knowing it was a temporary thing would allow a better tolerance of the suffering).

    AGGGHHH I could scream!!!!

  • I know what you mean. The need to cosset the specialist who knows less, the lurking ego that could turn nasty. I think many of us could self medicate responsibly and well, and get our lives back through doing so and save the NHS a fortune. What you say about addiction rings so many bells. But the story about the doc who sent you for CBT ... wow, that's just chilling. In what other profession could an epic mistake like that go unpunished. A potentially lethal mistake, actually.

    I hope your pain appointment goes well!

  • Thanks rkatt the last pain consultant was terrible and from the reply to my complaint the nursing and secretarial staff are covering his ass, (they said I didn't attend classes with no reason given however I contacted every time I didn't go and explained before hand that because of ME and no one to take me to the classes I may not make many of them), so an initial complaint about a rude and incompetent Dr has become something more!!!

    Doctors have a limited amount of knowledge and no one knows what the individual is suffering or their ability to cope except the individual who is more often than not ignored by the Dr.

    The training for Drs needs to be radically changed but the closed shop they operate wont allow it.

  • What part of the world is he in? I'm in the north of Ireland.

  • You can ask to see a different neurologist. That one sounds rubbish. Private doctors are not always better and certainly not more expert, they are just quicker to see and unfortunately more trigger happy with prescriptions in my experience.

  • Thanks brightredpoppy. I'll bear that in mind re private docs. One such - a private GP - saved my sanity by prescribing zopiclone for 10 years. But I'd been tipped off by a friend that he was good. He's now retired. And zopiclone ceased to help 2 years ago. I'll try to get friends to advise on private neurologists.

  • Ok- so now we all have let off steam.

    What can be done?

    Rkatt- you say you have a cautious and careful doctor and that the 'neurologist' will recommend a dopamine agonist. I only have experience with Mirapex (Pramixepole ).

    It's not the end of the world- let's work with what we have. If you get Mirapex you willl start at a low dose- I got relief on .18 dose for a year before mild augmentation - then I was offered Tramadol for a broken spine , so I went for it. Horrendous insomnia and moved to oxycontin - where I am now for three months and doing ok- itching and insomnia. But no RLS.

    So if you go mirapex it may give you a breathing space and time to educate your GP gently . I wouldn't advise such extreme measures as I have - but you could develope back pain- which is difficult to diagnose 😈.

    So - not all lost. I will leave it to others to advise on various dopamine agonists - patches etc - all have pros and cons.

    Good hunting and keep strong - there is a solution out there for you- just to find it. So good that your wife is at your side- a very precious perdon.

    Cheers.

  • Person!

  • Thanks Madlegs - that's very constructive and reassuring. Maybe it'll be ok. Or for a time, as you say, and then medical opinion may shift, or be shifted by me, with or without trauma to my back or anywhere else (lolz). A year of freedom would be wonderful.

    Yes, my wife is wonderfully supportive and involved.

  • Wise words from madlegs1.

  • I am sorry to say my experience with Mirapex was ghastly,one I put 27pounds on plus edema severe went on a mad shopping spree and that was just a few side effects.It could have been worse.How ever we are all different so I hope others have better experiences.

  • Is it possible for a concerted effort to complain to members of Parliament?It seems such an issue for so many surely something could be accomplished if enough people complained to draw attention to the waits etc.Only a thought.Remember the suffragettes.

  • saw a neurologist at my local hospital, after a 6month wait.

    He could not have been nicer. Did a lot of tests and said there was nothing neurological wrong. Had bloods done. serum protein/blood glucose/serum ferritin.

    All normal. going on to have a nerve conduction study. He has also changed my tablets. After taking 6 ropinirole a day I am starting on 1 tablet of pramipexol per. night. Hoping for some success after 50 years of suffering

  • I dont quite understand.. the neuro said nothing neurological wrong. But RLS is neurological. If you were taking 6 ropinerole a day i am guessing you were having augmentation..? What dose of the pramipexole has been prescribed for you.

  • Elisse, I haven't been taking R. Only Gabapentin which helps up to a point. My complaint was that she didn't listen, treated me and my wife with ill concealed contempt, failed to understand what I said, misconstrued what I said. She would not prescribe Tramadol which I know helps massively and insisted on dopamine agonists despite the fears i expressed that they were addictive and augmentative .

  • Hi rKatt my reply was to cumonelieen about her ropinerole.. :)

  • Ahh, gotcha. Sorry.

  • rKatt, the dopamine meds are not addictive by any means. But yes the can cause augmentation. If you do try them out then keep the dose as low as possible, For Mirapex (pramipexole) the new recommended dose is now no higher than .25mg thats two pills of the lowest dose. For Requip (ropinerole) its no higher than 1mg and that is what all the RLS experts are now saying. Unfortunately this information hasnt filtered through to most doctors. If you try the dopamine meds out and the doses i have posted do not work then you do not let any doctor or neuro increase them, you then need to change to a different class of meds. Even a low dose of a dopamine can cause augmentation, but would be alot easier to detox from them. Also you could try the Neupro Patch that is also a DA but some people seem to do better with not having augmentation altho it can happen. Using a 1mg patch along side your Gabapentin could work well. As taking two meds at low doses can be better than just taking one med.

    I am sorry you had a rough appointment. I have never seen a neuro, my GP takes care of my RLS and my meds. But i have enough knowledge of what works for me and what doesnt so i relay that to my doctor. Good luck.. :)

  • That's invaluable advice! I'll make a note of it. Thanks!

  • I haven't read all the replies yet, but here is the man you should get in touch with -

    Kallol Ray Chaudhuri

    Professor Kallol Ray Chaudhuri MD FRCP DSc

    Professor of Movement Disorders

    Start date at Kings: 1/10/13

    Contact details:

    Telephone: +44 (0)20 7848 5681

    E-mail: ray.chaudhuri@kcl.ac.uk

    Department

    Basic and Clinical Neuroscience

    Research Group

    NIHR Dementia Biomedical Research Unit

    Good luck x

  • The Prof is one of the speakers at the RLS-UK AGM in September.

    Unfortunately there is a long waiting list to see him as is always the case with excellent doctors.

  • Brilliant. Thanks, SLMPC, that's great info.

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