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TOPIC: Doctoral thesis

Doctoral thesis 1 year 8 months ago #3931

  • charlene
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Hi everyone !

I'm a French student (so please forgive me for my poor English) and I'm seeking your help. I'm a future surgeon dentist and I'm currently working on my doctoral thesis, wich is about oromandibular dystonia & botulinum toxin injections.

I've found a lot of informations in the scientific litterature but I'm missing an important part which is the patient's point of view.

I would like to hear about your experience, your feelings, your impression about your dystonia and your treatment(s).
Were you diagnosed late or early? Who make the diagnosis? What is/was your treatment? Is/was it effective? What did you think about the medical care, the medical staff? What could be improved according to you?

Everything you would like to share is welcomed. I'm not here to give medical advice nor to judge you. I just want to make my colleagues more aware of this rare trouble.
I'm trying to develop a kind of protocol meant for surgeon dentists, to make the diagnosis of oromandibular dystonia (or meige syndrome) easier and therefore avoiding the misdiagnosis.

Best regards

Charlène B.
Last Edit: 1 year 8 months ago by Bernie.McMahon. Reason: Moderator edit - Email addresses are not allowed on the forum
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Doctoral thesis 1 year 7 months ago #3945

  • Tim G
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Hello Charlene,
I was diagnosed with oro-mandibular dystonia a few years ago. My diagnosis was quick ,as I had see my dentist and Ear, nose and throat specialist , as I thought I was chewing to make saliva. ( my Mum has Sogrens syndrome). They both said nothing wrong with saliva production. I was then referred to a neurologist who confirmed the diagnosis.. A series of medications did not work, and had unpleasant side effects. I was the referred to specialists in London. I have received botulinum toxin injections in various muscles in my face i.e. masseter, temporalis and lateral ptygeriods. All with no effect. The neuro physiologist treating me says it is a question of finding the right muscle . I have been having injections now for a few months in my chin for the glossis muscle. This needs to be done in small incremental doses as to lessen the risk of effecting swallowing. This has no had any effect- good or bad so far. I am due to a review and more treatment later this week. it is all rather depressing and difficult to remain optomistic that some beneficial effects will happen. The symptoms are a tightning of the jaw when talking or eating. Eating can be a bit messy at times and I have to be careful what I eat, as a lot of chewing is difficult. I feel I am well looked after by the specialists I see. Hope this is useful. Give me a message if any more info required. Although personal emails are not allowed on this forum, if you want direct contact with me try contacting the Dystonia society in London and ask if they will forward you details on to me .

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