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  • Process of diagnosis

    Please help!! Hi everyone, I have recently just found this but I have suffered from what I can only describe as torrettes syndrome for over 15 years. I'm 23 now and for the last 8 years doctors have on three different occasions tried to send me for behavioural therapy with a physiologist. On all three of these occasions I haven't been contacted after my original assessment meeting. I've finally found a doctor that believes what I have is a medical condition and not just a physiological issue. I believe that this therapy may very well help many people in different circumstances and problems throughout their life, however I am lucky enough to have never been through any major difficulties and these phycologists feel that I need to find a 'root cause' for why and when these ticks started. I've explained that it's hereditary and that my dad and grandad had traits of torrettes but were never diagnosed with it. I also suffer from Ocd. After lots of fuss my doctor has now refered me to a neurologist at the hospital. Is this the route that has finally given anyone a real diagnosis of torrettes syndrome? I feel like I'm constantly at a dead end and don't want to get my hopes up if this isn't likely to help me? I feel like no one understands this illness enough and I know more about it than they do. Will I finally find someone who can tell me this is actually a medical condition and help me?
    Last edited by CharlotteLong; December 1, 2014, 11:53 AM. Reason: Help!! :(

  • #2
    Re: Process of diagnosis

    Welcome to the Tourette Syndrome Forum, Charlotte. Thank you for joining us and I hope we can answer some of your concerns.

    behavioural therapy with a physiologist
    I believe you mean behavioural therapy with a psychologist which is not unusual nor a waste of time. We know that Tourette Syndrome is a neurological disorder and that tic symptoms are involuntary, in recent years psychologists have developed effective and successful behavioural therapy strategies that can help manage symptoms. There is no cure for Tourettes, and behavioural therapy cannot completely eliminate tics, but the strategies learned and be used lifelong to help manage tics to reduce their frequency and/or intensity.

    This form of behavioural therapy is called Comprehensive Behavioural Intervention for Tics (CBIT) and our Forum contains considerable information about CBIT HERE

    CBIT involves a comprehensive approach using principles of cognitive behavioural therapy (CBT) combined with principles of habit reversal therapy (HRT) to help learn what factors in our lives tend to make tic activity better or worse, and to use that knowledge to either avoid the situations that make symptoms worse or to lessen their impact, and to make use of the situations that make tics better.

    CBIT teaches us to understand our tics, and to address the tic that causes the most concern, and to use specially designed competing responses or tic blockers, using habit reversal principles to gain control over tic symptoms.

    What was your own experience with behavioural therapy and why did it not seem to work for you?

    my doctor has now refered me to a neurologist at the hospital.
    Your doctor has taken the rational step to have you assessed by a neurologist, a specialist who understands movement and tic disorders. Be sure to bring plenty of written notes with you with a detailed family history and a history of your symptoms from early childhood. Tell the neurologist how your tic symptoms evolved over time and what treatments you received and your experience with each of those treatments.

    The neurologist may want you to get some medical tests to rule out certain medical conditions, but since there is no diagnostic test for Tourette, the diagnosis can only be made through observation and interview, which is why you need to come prepared with lots of information. Written notes are the best way to ensure you will remember to report all the details to the doctor.

    Are your tic symptoms interferring with your work, your studies or your social activities? Are you receiving any treatment for your OCD symptoms?
    Steve
    TouretteLinks Forum

    Comment


    • #3
      Re: Process of diagnosis

      Hi yes my ticks can sometimes become so severe that I'm unable to go out in social environments as too many people make comment of my ticks. I work in care for a lot of elderly who do not hesitate when asking what "that stupid noise I'm making is". My ticks are both verbal and physical head twitchs and arm twitches.

      The main one is the noise that I just can't stop like a squeaking that can sometimes be mistaken for laughing. This can also cause some problems when talking to people who don't know me well enough to understand. Sorry my phone auto types everything wrong so yes I did mean phycologists.

      I have had problems with this as they haven't sent me to any special therapy that relates to my ticks but to a normal IAPTS therapist that has hardly mentioned my ticks but just wants to drag up all my life history and emotions that I feel have nothing to do with this and don't ever make note or mention anything that I could do to help my ticks or even talk about my ticks

      they just seem to want to talk about my family and relationships like "what's your relationship with your father do you ever feel like you were let down how do you feel about this" not " what triggers your ticks and let's find some way of you being able to cope with them emotionally"

      I feel like they have made no effort to actually assess whether this is torrettes syndrome or not they just say "you need councilling by the sounds of it" I'm not receiving any treatment for my Ocd the doctors don't feel that it relates to torrettes or that it's severe enough to be looked at
      Last edited by Steve; December 1, 2014, 01:38 PM. Reason: format

      Comment


      • #4
        Re: Process of diagnosis

        I feel like they have made no effort to actually assess whether this is torrettes syndrome
        Charlotte,

        Is it correct that you have not been seen by a medical professional who specializes in movement and tic disorders, or at least has a good understanding of Tourette Syndrome? If that is the case, your best course would be to contact the Tourette Syndrome Advocacy organization in your area to point you to the right resource. In what Country are you located?

        my ticks can sometimes become so severe that I'm unable to go out in social environments as too many people make comment of my ticks
        This is where you need to be proactive in order to explain to people that the sounds and movements you sometimes make are involuntary and are probably due to Tourette Syndrome (which you can say definitively once you have an official diagnosis).

        You could carry an explanatory brochure about Tourette to hand to anyone who is not familiar with the disorder. Some Advocacy groups have ID cards you can get.

        they just seem to want to talk about my family and relationships........not...what triggers your ticks and let's find some way of you being able to cope with them emotionally
        For a psychologist to assess your needs and your state of mind, a psychological history would not seem unusual; It would seem the psychologist might have been trying to assess the family environment and family dynamic during your growing up years, to ascertain the degree of support you may or may not have enjoyed, and to what degree family reactions and attitudes might or might not have affected the way you feel about your symptoms.

        This information is crucial for the therapist to devise a treatment plan and strategy for you to use in your cognitive therapy.

        There is no one mode of therapy or treatment that works like a magic wand to suddenly and instantly eliminate your symptoms, change your attitudes toward yourself and your disorder, and possibly even your self esteem.

        Your therapist may propose working in partnership with your neurologist, who may consider some form of medication therapy, combined with your cognitive behavioural therapy. Furthermore, you may want to discuss with your therapist, your family doctor and even your neurologist that you want to be assessed for a comprehensive approach to address your tic symptoms as well as your OCD symptoms, in in fact you feel your compulsions are causing you distress in your everyday life.

        Charlotte,

        May I ask exactly what are your objectives at this time? Do you need an official diagnosis in order to establish a treatment strategy? What is your expectation in a possible treatment strategy? Do you want to address your OCD symptoms, are you hoping to manage some of your tic symptoms?

        By deciding what your objectives are, you can then establish priorities which you can discuss with the doctors and therapists with whom you intend to work. Work with your medical consultants in a partnership, so there can be two way communication between you and the doctor, and ensure that the doctors are communicating with one another.


        The correct spelling for the name of our disorder is Tourette Syndrome and the word for the symptom is tic, not tick. Because these posts are read by many people who use them to learn about Tourette Syndrome, it's important to use correct spelling.
        Steve
        TouretteLinks Forum

        Comment


        • #5
          Re: Process of diagnosis

          Thanks yes I've explained my phone doesn't let me type very well sorry it just changes everything and it takes forever to change it back. I've been referred to a therapist three times. The first time and last time the lady said she didn't know anything about it and wouldnt be able to help me if it involved my emotions towards Tourettes that I would need to see clinical therapy. The second refused to talk about my tourettes and even asked me what I was doing when I had a tic. She then decided that my tics would go away completely after my therapy with her and there was "just no need to do it" and if I work out what triggered it, then it will go away. I don't believe this is something that will ever go away. I don't believe any treatment or medication will ever stop my tics and I do understand that so I was very upset that she felt she had a cure. This Is what I mean by I don't feel I've even met anyone who understands tourettes syndrome more than me. All I'm looking for really is a diagnosis. I think this will help me a lot, and my tics do slow down when I'm not anxious or stressed so this will help me to know its not just me and it is a medical condition. I would then look into ways, people to talk to that may be able to help me cope and manage with my tics. I do feel that they need to assess that I do have tourettes syndrome first before sending me to councilling. I've had trouble with people believing me in years. One doctor said to me a couple of years ago that im " not exactly shouting obscenities at people so it can't be tourettes" and he said "unless you are causing major physical harm to yourself by these tics then I can't refer to you a neurologist because it's not serious enough for them to deal with" I was shocked that the doctor knew so little about tourettes syndrome and I think I've just been very very unlucky to not find someone on my side in all this time.
          Not even my family stand by me with this they still take the mick out of me to this day as I have no diagnosis I have nothing to say in return.

          I do understand that the therapist will want to know everything about me but I don't feel my experiences are right or the right way around.

          And no I haven't seen one professional that even understands tourettes syndrome or specialists at all. Only been to gp and then IAPTS, gp then IAPTS, gp them IAPTS, gp then now this appointment with a neurologist. I'm from Warwickshire...
          Thanks
          Last edited by CharlotteLong; December 2, 2014, 03:25 AM.

          Comment


          • #6
            Re: Process of diagnosis

            Tourettes Action

            Charlotte, if you haven't contacted someone through this link I think it would be more than worthwhile to do so. As advocates, they would tend to have a good feel for local expertise to be able to help with suggesting the most appropriate local resources, including what sounds like the most important one for you at this time; support. Are you able to attend a TS support group in your area?
            Gina Higgins
            MD, CCFP

            Comment


            • #7
              Re: Process of diagnosis

              Locally in the U.K. Tourettes Action provides support and information about local resources through the Tourettes Action Helpdesk.

              Local community support groups are located throughout the Country so you can find out who are the medical professionals with the expertise in Tourette Syndrome you need.

              I will get back to this discussion shortly to add additional comments.
              Steve
              TouretteLinks Forum

              Comment


              • #8
                Re: Process of diagnosis

                Thank you I will have a look at it I appreciate it

                Comment


                • #9
                  Re: Process of diagnosis

                  Sorry for the delayed response..I was involved in something else that required my full attention.

                  All I'm looking for really is a diagnosis. I think this will help me a lot, and my tics do slow down when I'm not anxious or stressed so this will help me to know its not just me and it is a medical condition. I would then look into ways, people to talk to that may be able to help me cope and manage with my tics.
                  A competent and accurate diagnosis is all any of us really want, and you certainly deserve to know the cause of your symptoms so you can take the necessary steps to access the resources you need.

                  This is why I recommend your contacting Tourettes Action in the U.K. so they can point you to the right consultants who understand tic disorders and Tourette Syndrome.

                  In Tourette, although tics are involuntary, they are affected, either positively or negatively by environmental factors such as stress, fatigue or excitement or by the way others around us react and respond to our symptoms. A qualified and trained therapist with clinical experience in Tourettes understands these mitigating factors and can help you deal with them.


                  She then decided that my tics would go away completely after my therapy with her and there was "just no need to do it" and if I work out what triggered it, then it will go away.
                  Not knowing the qualifications or expertise of this particular therapist, nor your diagnosis, it's hard to say for sure, but someone with a diagnosis of Tourette Syndrome should not expect to completely eradicate their tics with a cognitive approach. A more realistic prospect would be to manage tics voluntarily when needed in certain situations, using a cognitive approach, but not to expect a cure or complete tic remission.
                  Steve
                  TouretteLinks Forum

                  Comment


                  • #10
                    Re: Process of diagnosis

                    Hi Charlotte, First, welcome to the forum. I am really sorry you have had to go through so much in trying to get help and a real diagnosis. After my son's tics increased and lasted for so long, he was finally referred to a neurologist who then did diagnose him with TS. So yes, they should be able to evaluate and understand and diagnose if it is neurological/Tourettes, etc. I'm in the U.S. and I think maybe I was the one who had to ask for the primary care doctor to refer my son - as they tend to say these things will go away, etc. and to give it time. But, so much time passed and things were getting worse. I hope you can get in to see someone soon and you can have some peace of mind about it all. Take care.

                    Comment


                    • #11
                      Re: Process of diagnosis

                      Hello CharlotteLong!
                      Sorry to be late with this. I'm going to add my version anyway.

                      Please help!! Hi everyone, I have recently just found this but I have suffered from what I can only describe as torrettes syndrome for over 15 years.
                      First let me assure you that there is no reason for alarm. While TS has a bad reputation in society it is nothing that can't be mastered and understood, IF you actually have it. I'm not saying that you don't, but a lot of the advice and commentary that you see around here may not be helpful if you do not have it. Large parts of it are like personality and physical characteristics or quirks. Even what we think of as normal can be excessive and problematic.

                      If you don't have a diagnosis we can talk about what TS is and how it can be controlled or even channeled, but there will be lingering doubt and a misdiagnosis can cause serious problems.

                      I would describe TS as an increased tendency to create physical, perceptual and behavioral habits due to differences in a person's inner emotinal environment. It's not all a bad thing and can even be harnessed to become skilled at creating good habits in time. Tics generally never go away, but we learn to live with them by choosing how we tic. Our minds always connect emotion to perception and action so extra emotion needs to do something.


                      I'm 23 now and for the last 8 years doctors have on three different occasions tried to send me for behavioural therapy with a physiologist. On all three of these occasions I haven't been contacted after my original assessment meeting. I've finally found a doctor that believes what I have is a medical condition and not just a physiological issue. I believe that this therapy may very well help many people in different circumstances and problems throughout their life, however I am lucky enough to have never been through any major difficulties and these phycologists feel that I need to find a 'root cause' for why and when these ticks started.
                      Can you tell me specifically how the therapy and medical condition were described by the doctor? There are actually quite a few things that are associated with physical tics. TS has a bunch of other associated characteristics as well.

                      I've explained that it's hereditary and that my dad and grandad had traits of torrettes but were never diagnosed with it. I also suffer from Ocd.
                      It's pretty common for families that have certain inherited traits to have diagnosed younger members and undiagnosed older members. One reason no to worry quite so much is that whatever is going on, the human race has seen it before even if the way we talk about it has changed over the years.

                      Did you get a diagnosis for OCD?


                      After lots of fuss my doctor has now refered me to a neurologist at the hospital. Is this the route that has finally given anyone a real diagnosis of torrettes syndrome? I feel like I'm constantly at a dead end and don't want to get my hopes up if this isn't likely to help me? I feel like no one understands this illness enough and I know more about it than they do. Will I finally find someone who can tell me this is actually a medical condition and help me?
                      A neurologist is a person who can diagnose TS. As for understanding there are many people here who understand TS. If what you have is not TS even then there is likely a group of people on the internet that is actively talking about whatever you do have.



                      Hi yes my ticks can sometimes become so severe that I'm unable to go out in social environments as too many people make comment of my ticks. I work in care for a lot of elderly who do not hesitate when asking what "that stupid noise I'm making is". My ticks are both verbal and physical head twitchs and arm twitches.

                      The main one is the noise that I just can't stop like a squeaking that can sometimes be mistaken for laughing. This can also cause some problems when talking to people who don't know me well enough to understand. Sorry my phone auto types everything wrong so yes I did mean phycologists.
                      A diagnosis is still needed to be sure, but this is consistent with TS. Tics are influenced by social environment and personal awareness.

                      IThe first time and last time the lady said she didn't know anything about it and wouldnt be able to help me if it involved my emotions towards Tourettes that I would need to see clinical therapy. The second refused to talk about my tourettes and even asked me what I was doing when I had a tic. She then decided that my tics would go away completely after my therapy with her and there was "just no need to do it" and if I work out what triggered it, then it will go away. I don't believe this is something that will ever go away. I don't believe any treatment or medication will ever stop my tics and I do understand that so I was very upset that she felt she had a cure.
                      TS is very specific. It needs a specialist. If TS is present tics will not just go away, but it can be managed and even harnessed.

                      While there are general characteristics, each persons psychology is shaped by their unique life. So if you have TS you will have YOUR TS. It comes in a rather large set of forms and types that are still being understood.

                      Comment


                      • #12
                        Re: Process of diagnosis

                        Hi thank you for your reply I much appreciate it.
                        The doctor didn't speak to me for any long period of time about a specific condition. But this had got to be the 10th time at least that I'd asked for help through the doctors. So I went in and said "I think I have TS" And he suggested behavioural therapy, I told him under no circumstances would I go for therapy again until I had a diagnosis and clearly an IAPTS councillor doesn't know enough /is unable to diagnose me. So he said he would get back to me and after a few weeks he's finally refered me to the neurologist. But now I have to wait up to 12 weeks for them to contact me for an appointment which I understand.

                        I haven't been diagnosed with OCD. my sister has though and we are extremely simular in symptoms but she suffers from it severely and actually the Ocd side I can live with because I've always been more worried about the possible TS.
                        If it helps to know my brother was suspected ADHD when he was young but was never diagnosed. What I suffer with though is very different and on a completely different (more obvious) level.

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