So fed up of rude Doctors!!

Why is  FND is never taken seriously? I am so...... fed up of been made to feel like a nut job.  Since having this diagnosis it really has destroyed my confidence in the NHS.I dread every appointment due to the rudeness of Doctors I'm scared to mention any new symptoms as I can't   deal with the Doctors skeptical option.  Is  it really too much to ask for a little compassion?  

Everyday is a battle emotionally and physically.  Before the diagnosis I was not depressed, I believe that the lack of clear pathways for this diagnosis is  having a negative effect on us. 

15 Replies

  • Hey, unfortunately this is a common occurrence for people with their GPs...

    Due to such a vast amount of illness and disorders around it's very difficult for GPs to keep up to date in such Indepth with every new condition that occurs. It's more upsetting when it is a condition so personal to us.

    Is it possible to be referred to a nuerologist who should and would have a better understanding of your condition. 

  • Hi,  Thank you for input I really appreciate it. 

    I am newly diagnosed with FND,  I'm really struggling with the lack of knowledge out there. I feel so ashamed which really isn't helped by skeptical Doctors / Neurologist.  

    Unfortunately my Neurologist is also rude.  Prior to this diagnosis i was very active,  running  my own business and loving every minute of it.   

                         Best wishes. 

  • Hi Sunride,

    The trick is to not let them intimidate you. Trust me, I've been at this lark for 3 years and the scariness of the symptoms I have endured has left  me fearing no mere mortal, no matter what their medical status and qualifications !

    This 'All in your head'  business  is their  basic fallback position  because their egos do not allow them to admit that they do not know what is wrong, or how to help , so they have created this little box marked FND to put all us troublesome unsolved patients to bed in ! Out of sight, out of mind. Let's get on with the easy to diagnose patients that our tests  and textbooks define .

    I agree, that judgemental attitudes , ignoring what the patient has to say and downright rudeness is unacceptable  and  a massive disservice to patients.

    Some stock phrases for doctors who are not engaging with you :

    I am finding it difficult to deal with  ... ( insert symptom )

    How are we accounting for... ( if tests are abnormal )

    Could you explain what you are basing that on, please ?

    Can we  address the symptoms of...

    Could you suggest ways to...

    Would it be worth trying...

    I feel that ...

    Most importantly ' I realise that my symptoms may not be considered as understandable  as an organically demonstrated   illness but can assure you that the impact on my quality of life is just as great'. 

    As you can imagine, my GP is NOT my bessie mate at this point !

    My next one for the neuro when I see him will be ' Is spasticity  now classed as a Functional disorder ? ' It should go down like a lead balloon lol !

    May I ask if you had any knocks to the head, viruses or infections just  prior to the start of your symptoms ?

    Angela x

  • Hi  Angela,  

    Thank you so... much for your extremely informative advice ☺ you have given me hope. (I am now (armed with questions )

    Prior to my diagnosis i suffered with a bad kidney infection  i also suffered from water infection.  The Neurologist has never asked about this I shall bring this up on my next appointment.

                        Best wishes. X

  • Angela,

    Thank you.  I am finding your post very helpful. I have printed out your suggested questions for my next appointment.

    Wishing you the best.

  • Hi there ....what a time your facing but like Andy says your doing so well considering the lack of support. 

    You have seen Lots of useful info. There are 2 Neurologists specialising in FND. Dr Joss Stone in Edinburgh and Prof Mark Edwards in London.  Based at St George's hospital. Tooting and queens square consulting rooms queens square, London. You need your GP to refer you to one them ASAP. If one says no ....go to another GP then another if need be! 

    I had drop foot for about 8 months and left leg weakness/ nerve pain for nearly 2 years...After 5 days recent intensive Neuro Physio under Prof Mark Edwards..I'm now walking better without my stick and muscle spasms, foot cramps are much better. Slowly coming off Amytrptyline tablets too I hope  

    Hope this helps, we are all different but you will find have lots of understanding and support on here 

    Take care Jane 

  • Hi Lucy-15, 

    Thank you so much for your response I really appreciate it. 

    It's wonderful to hear you doing so well it fills me with hope. 

    I shall certainly be looking to change GP and push for a Neurologist with knowledge of FND. 

                        Best wishes. Xx

  • Let's be thankful that we have a disability support system that doesn't go by medical diagnosis when addressing disability benefits but how it affects us! :) 

    If your doctor is super rude as i have experienced.. Then you be sure to go with someone else as a witness when seeing the doctor 

  • Hi, I too say get yourself referred elsewhere. It's taken me and my slowly deteriorating symptoms nearly seven years to be listened too. I eventually got referred (by demanding) to Neuro hospital, queens Square in London. I have never been treated and listened to so nicely. In previous years I have various diagnosis of FND, myelopathy, medically undiagnosed. February 1st of this year, I have now been and been treated as an inpatient with progressive ms, by one of the best ms neurologists in the country. I still can't believe it. I really was beginning to think I was going mad.

    Please, please, don't give up looking for the right help you deserve.

    Stay strong, keep as active as possible and rest you body and mind as much as you can. Don't let it control you, you control it. Keep smiling. X

  • Tilly,

    So relieved to hear that you finally found help. I have researched and understand that many have MS, un-diagnosed and untreated for many years before a diagnosis is given. What test finally showed MS?

  • The tests I had were not definitive enough, ie lumbar puncture, nerve tests,  but my medical history has pointed towards ms for the last 28years apparently. My MRI at Queens Square showed a couple of lesions and also brain damage from a stroke that I must have had (I think back in 2009, which I was told I never had). X

  • All of this is so unbelievable! Yes, all of us are living it.  I was told I had a stroke in 2009, this was disputed, also have white patches in my brain last MRI..and three abnormal EMG/NC Tests as well as other abnormal test results. This is enough to make someone go mad!

    I am sorry that it has taken you so long to get a clear diagnosis. What can be done to fix this very broken medical system in the US and in the UK? I feel like fighting for our rights!

    Sending you support.

  • Tilly, what a long and frustrating battle you have had. So glad you have finally got the answers and help that you needed.

    Sending all best wishes to you x

  • Thank you for your kind words. Xx

  • I agree and am sorry that you are having to deal with such rudeness and frustration. I too, dreaded every neurology appointment and would leave feeling drained and disrespected. 

    I spent 6 and a half years seeking a diagnosis.First I was told it was MS, then not, then ????, then must be emotional, then Myasthenia Gravis, then ????, now FND and M.E. During those years I sought counseling and evaluations with psychologist, and therapists. I wanted to get well and wanted to know what I was dealing with. No indication in their assessments that I had any psychological problems causing the illness. 

    I experienced such dismissive and disrespectful attitudes by neurologists, and some ER doctors.. I was fortunate to have supportive GP, urologist and a functional neurologist/chiropractor. I now have a good neurologist, who is respectful kind and supportive.

    I too, had a full and filling life without stress or depression. This illness, not knowing  the diagnosis and the mistreatment of some doctors has resulted in stress and some depression. It is so difficult to live with a chronic and progressive illness..and then not to have a name. Even friends find it difficult..."what, your doctor doesn't know what's wrong with you?"  All of this contributes to feelings of helplessness, frustration and despair. 

    I learned to advocate for myself and stand up to the doctors and other medical professionals. I am not always successful, depending upon my energy levels, but I continue to speak up.  We shouldn't have to fight a battle with the medical community as well as with this illness, but we do.

    We need to fight for more research, leading to effective treatments and better care. Hard tho to fight when energy is so low and each day is one of energy conservation and rest.

    For you, I am sending support and wishes for a neurologist who will give support and not give up.


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