Hello. I was diagnosed with craniofacial dystonia 6yrs ago. I have been treated by my consultant Dr Kearney in northern ireland - where I live - and had further treatment in London. last week Dr kearney informed me that due to my not gaining any benefit from all available treratments, he I am being discharged. This, coincidently, came after a letter from London neurology stating that they could do no more for me and had discharged me. Has anyone else experienced this? I am now without a consultant specialising in this condition and am admittedly feeling that the medical community see me as a hopeless case, or worse: that they don't believe that my symptoms are ' real ' now. ( I was diagnosed by a private neurologist in Lancaster before Dr Kearney's same diagnosis ). I am in a very low place as a consequence and wonder if this is even ' correct proceedure '. Any. advice/information would be greatly appreciated...
Warm Regards
leepen
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leepen
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Just want u to know ur not alone..just because a couple of doctors said what they said doesnt mean u should give up hope.Go a different route of medical help for yourself.I'm a medical mess n im not giving up..no way..I'm gonna prove the docs all wrong n I have in baby steps.Be strong..U CAN DO IT!
about eight years ago I thought i'd found my doctor. for the first time since I got sick as an adolescent, someone actually listened to me! when I told him about past experiences with doctors, he even sighed and shook his head. however, he decided I had a particular disease and he kept testing me for it. over four years, each test came back negative. I found out later he is more of a researcher; I think he saw me as a guinea pig and not a person.
fast forward to 2016 when I developed weird symptoms I now know to be dystonia. for about two weeks my left shoulder jerked to the point where it felt I had a knife dragging down my back. it was so painful and I could barely sleep. I called the office repeatedly and was fobbed off over and over again. it slowed down then came back. I called again and they gave me the run around. I finally got to my appointment. he barely looked me in the eyes then told me I needed to see a psychologist before he would treat me. this while i'm trying to hold up my head and am jerking. I even caught him studying me to see if I was jerking while I talked to my mother!
I went to the psychologist who immediately informed me dystonia isn't psychological. I fired the neuro. I found a new one who refused to do any testing and called everything 'functional.' I fired her.
now i'm seeing a third neurologist and am cautiously optimistic. do you currently receive treatment through the nhs in England as well as use public services in Ireland? is it possible for you to pick a neurologist or will you have one assigned based on their determination of your need? I'm not familiar with healthcare in Ireland. I hope you can find a new doctor. if so, then do. we know our bodies and these people with their massive egos make pronouncements without having a clue of what we go through. to make matters worse, they seem incapable of saying, 'I don't know.' instead they blame us and pretend it's in our heads.
i'm so sorry you are going through this. stay strong.
Our stories are extremely similar.. n ur exactly right . Ive learned more about Dystonia on my own (n things to help me) then when I had a neurologist. Some people r lucky to find a good one (neurologist).. Ill pass for right now lol
I hope ur day is better today for u? Happy holidays to u.
hi there, I'm sorry to hear this awful news your dealing with regarding dystonia. I can only advise you what I would do in your current position and circumstances around this appalling position that you are in. if an NHS or a private doctor, normally not just a doctor, a neurologist or a movement disorder specialist should not be able to dismiss you from treatment as you have an official diagnosis. also since dystonia has no cure, treatment is crucial to you as dystonia is a debilitating neurological condition. I would remind those you have mentioned this, also another option for you is to look up online The National Institute of clinical excellence and read the guidelines they provide for dystonia and I'm very sure that will reassure your medical needs right now. hope this helps you.
Hello to all of you who have taken the time to read of my predicament; for your advice and support. Please forgive my late reply: My predicament regarding Neurologists' decisions and subsequent concern, is compounded by another concern, that being my PIP decision/assessment - all just before Christmas. I've been following guidelines and advice in an attempt to deal with the latter ( PIP ) due to how pressing my situation is financially and the time restrictions. Anxiety is also heightened and pushing through this is a daily challenge - an area in which I am not doing well, unfortunately. I've been offered excellent support from the Dystonia Society in providing me with letters of support and over the phone. I am yet to fully enquire into what to do about my Neurologist's decision to discharge.
Many thanks to you all for the much needed ease you have provided from this experience of further alienation.
Dear Jojodys, I looked on the NICE website, but was unable to find anything that speaks of practice of care for Dystonia. I actually didn't find much on Dystonia - maybe I'm looking in the wrong ' places '?... I dearly hope the holiday season was kind to you and things are good for you.
Dear BlanketTime1, thank you for your story and strength. In the beginning ( 11/2010 ) I had no clue what was happening with my face. my GP referred me to a neurologist who acted with apathy, judgement and unprofessionalism, sadly. After this experience, I borrowed financially to see a movement disorder specialist ( neurology ) in Lancaster who, after a physical examination lasting 15mins, diagnosed oromandibular dystonia. He advised me to contact the Dystonia Society since I was not able to afford ongoing private care. On the same day that I contacted the Dystonia Society, they found a neurologist who specialised in dystonia at my local hospital and advised to go to my GP for a referral. My GP referred me as an emergency, given that over 2 years had passed since my symptoms began. Within 15mins, the NHS Neurologist confirmed diagnosis of Primary, oromandibular Dystonia. Over the next couple of years, however, with my lack of response to treatment, my diagnosis by him was blurring, in that the words ' probable ' and ' possible ' were now being intermittently added. It was through my Neurologist feeling that my case was complex that I was referred to and seen at the London by two other Specialists over a space of 3 years. The first of which, seemed attentive, but sadly didn't follow through on all that he had said he was going to do for my case. After receiving no follow-ups from him ( or discharge letter ), I, myself, contacted a prominent specialist in botulonium treatment in London who was no-longer with the NHS - hoping for advice. She gave me the name of a specialist whom she, herself, had trained and advised me to request a referral. My neurologist was able to do this, and gained NHS approval. I did get some relief from the blepharospasm, but none of the treatments helped with my lower-facial spasms. Oral meds caused severe side-effects with me. The second Neurologist in London referred me back to the first one I had seen at the London previously, due to her feeling that some aspects may be functional and considering the movements were atypical. She then informed me of his expertise in this area. I told her of my experience with him not following through with treatment and hence my apprehension, but she felt it was worth doing and so I agreed. She also told me that she, herself would not be discharging me in case the blepharospasm flared up again and leaning forward, reassured me with ' We are going to get you better! ' Three months later, in letter, I was informed that both herself and the Other had decided that there was nothing more they could do at the London. No explanation was provided.
I saw my own Neurologist within a month of receiving the letter and it was then that my neurologist also declared ( recalling his own words ) that he could/would not ' be able to solve my problem... ' and thought, ' at this stage ( I should ) try to develop ways to cope with living with it better... ' I wasn't sure if I was hearing correctly and so asked if he was discharging me. In a few words he confirmed this, but added that he was referring me ( yet again ) to neuropsychiatry, as well as E.N.T and others... Then, seemingly exasperated said, ' Okay. Ill see you in a year's time, as a follow-up on the neuropsychiatry. On leaving the appointment, I was rendered what I can only describe as, in shock, precariously emotional and despairing. This state flares up sporadically now. I felt only appreciation and respect for my neurologist prior to this. So the fight/flight/freeze condition is what I'm dealing with: whether to walk away or do something? I'm stuck presently with this question.
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