Undiagnosed and rare conditions
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Getting a better diagnosis for tics

LaughingLollyLaughingLolly Member Posts: 101 Pioneering
What do you think? I was diagnosed twice with Tourette syndrome but then my diagnosis was revoked because one neurologist thought I had functional disorder and not M.E. Which is my other diagnosis. I'm the end my M.E. Diagnosis was confirmed despite neurologists trying hard to get it overturns and I was given the all clear for mental health and not given a diagnosis of functional symptoms not the end. However....

I still suffer with vocal and motor tics every day. 

Its obvious to me i have a tic disorder I even Tourette and they have tried to remove the diagnosis expecting all my symptoms to be diagnosed as functional - which they were not! 

I'm the past I help my tics in a lot and I could not talk about collisions at all because I thought it meant I was mentally unwell or demonised. I now know better and I wish I could explain this to a reasonable neurologist. Can you imagine having vocal and motor tics including the rare occasion  of coprolalia but having  no explanation  of this? 

I was told by the neurologist revoking the diagnosis that mine started at 20 and TS starts at 18 but he was the same guy diagnosed it with my mother in the room who said I had some repetitive movements such as nose flipping from young. I've also come to recognise some things as tics they I did not at the time such a throat clearing exercise I started again t the other day then remembered I had it as a teen ,- before the age of 20!!!

I blind tested my family including my husband, daughter and son enjoyed autism so is always brutally honest as to showing them several YouTube people with a variety of different conditions including functional disorder and Tourette and asked them which one I was like and they chide Tourette within knowing what the people had. I also red in the full criteria of everything including comorbidies and they chose Tourette 

I think the doctors have made a mistake in revoking the diagnosis and now they have told me that they have also lost my original hospital notes from they time period - which included the 6 page report with my results for Aspergers ,- in which I pass highly as having Aspergers! My family day I obviously do have Aspergers. 

What do you do when this happens to you? All I've been able to do is make videos of my symptoms. I now have gone of them and a YouTube channel about it. I now have had leg, neck and abdominal tics for ,27 years and back tics for slightly longer if you count things I didn't realise were tics such as compulsive throat clearing . I joined the functional disorder group for years but had to conclude that I do not really get a wide enough range of symptoms to say the tics are functional. I think what was happening was I was holding tics in so much I was getting tic clusters and these look like seizures. However. I can talk work and drive with them so I don't think they can be a seizure of any kind. Mostly people suggesting that have never seen them. But now I have made videos of them I can see a by more clearly. 

I can't say I have never had any functional symptoms because I think any illness can produc e they under stres s. But likely the fact that diagnosis have shifted and I've been suppressing so many tics thinking they are sought g else contributed to that. I now only have tics. I mainly stay at home and I tic all the way through the night my husband says and the tics sometimes wake me up if they are violent enough. 

My main tics are a head tic to the right, a left leg jump and abdomen tics. My vo cal tics are animal noises, saying the word burp outload, saying words and the occasional raspberry blowing tic. I also get a horrid tic where I say 'f off Jesus' loudly but this mainly occurs in religious settings which is embarrassing f or me as I am religious! 

I spent a lot fine surpassing tics and never really told the neurologist all my tics because of embarrassment and also religious beliefs I held at the time. I was also scared and other people such as my first husband had managed to convince me I was mad - so I believed it. Only years later and after therapy I have realised I am not and and there tics aren't my fault end they are neurological.

I use a wheelchair because some of the tics make my leg jump and this had resulted in stupid ideas like t the leg neurologist actually thinking I believed I could not walk - even though I clearly walked to the examining desk! She then rested my right leg ( which is not the leg that jumps) and said there you go it works! It had nothing to do with any symptom I had! However they are such arrogant people it's hard to shift their conclusions ,- even when their reasons for getting their lack logic  are based on assumptions or are enacted on the wrong leg (as was the case)/ 

I'm pretty tired of it all and don't know how to progress forward. No one seems to listen properly or to the people that actually matter (such as my current f family) but instead they just rely on the last opinion even if it was 10 years ago and the w ronng leg was tested. Everyone who sees my videos says I have tics or Tourette syndrome. Should I push for a diagnosis or just live with the abominable tics unquietly?
A laugh a day keeps the psychiatrist at bay. 

Replies

  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,350 Scope community team
    Hello @LaughingLolly. I'm sorry no one has been able to help you with this or offer advice or support. Have you continued to push for a diagnosis? 
    Senior Community Partner
    Scope
  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    @Adrian_Scope yes. I asked for the option on one of my videos of the guys who runs the FND website (he does not have a private practice) then I sent my notes and some videos to a movement specialist who is practicing in lockdown. I'm not sure how it is going though. He asked for a lot of information but then I've had no reply. Maybe I just have to live with it? There are more important things and plenty of us walking around with an array of symptoms out diagnosis ' don't explain or with no diagnosis at all. It seems odd after 30 years that no one has taken my case on board so to speak. Getting passed around isn't great for anyone's mental health but I'm kind of okay now we are in lockdown as my symptoms are hidden. 
    A laugh a day keeps the psychiatrist at bay. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,360 Scope community team
    Hi @LaughingLolly, I hope they are able to help. When did you last hear from them?
    Community Partner
    Scope
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