Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

It’s Dystonia Awareness Week 2015! In a similar way to last year I plan to do a series of blogs explaining the different aspects of Dystonia. Normally my family and I hold a bakesale to help raise funds for The Dystonia Society during the awareness week. However due to the majority of my family having exams this month we have decided to delay this until June. I’ll be posting the date for this soon.

I want to focus today on the road to diagnosis and treatment. This is such a scrambled and boggy area to tread. Many people with Dystonia suffer with the condition for years before getting diagnosed. Often we are made to feel as if it is all in our heads, and end up with referrals for counselling. Trying to get medical professionals to listen and take us seriously can be extremely hard, especially if they have not had any experience with the condition before. I don’t believe they intend to make us doubt our own sanity but it happens.

In 2012, for example, I spent just over a week in a local hospital after the muscles behind my eyes spasmed, forcing my eyes to roll back in the socket and stay there, leaving me functionally blind for 15 hours. Those 15 hours were hideous, I was terrified and in a fair amount of pain. When you looked at me only the whites of my eyes could be seen. I was repeatedly told by doctors during this time to “just roll your eyes down”. Needless to say it became hard not to snap and inform them that if I could do that, I would have done so already. I felt as if no doctor believed me. I was forced to talk to a psychiatrist during my stay.

A couple of months after this I met my wonderful neurologist, who took the time to really listen and examine my symptoms. I was fortunate to get diagnosed in a matter of months. Many others with the condition are misdiagnosed for years, decades in some cases! This is one of the many reasons awareness of this debilitating and life changing condition is necessary. A correct diagnosis leads to treatment that can help improve quality of life. The more awareness that there is the better chance of sufferers being diagnosed in a far more timely manner.

On Wednesday 6th May a Dystonia Awareness message will be sent out Via Thunderclap. The more people that sign up for this the further the reach of the message. So please sign up at the following link https://www.thunderclap.it/projects/24206-dystonia-awareness-week-2015 .

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Comments on: "Dystonia Awareness Week 2015 – The Road To Diagnosis" (5)

  1. Anyone on the neurpo patch ?
    I have been on it since. Feb.
    Started. At 1mg. Now on 4 mg
    And no results at all
    The dystonia affects my walking.
    Gait.

  2. When you had the eye issue, was there any warning? My daughter has Dystonia and has started to complain about a “pain behind her eye”…one at a time. So reading your post frightened me a bit.

    • Hi Renne, try not to panic, it’s not a very common symptom. Pain behind eyes is also a symptom of migranes, so if your daughter is prone to headaches it be that. I didn’t get any warning, sometimes my eye lids would flicker first or I’d find it hard to look where I wanted to but often there was no warning. Has your daughter tried to sensory tricks e.g massaging around her eyes to see if that helps relieve the pain?

  3. Ana Romo said:

    Fortunately, I don’t deal with this condition, but the fact that is hard to get professional help, makes me think of how much suffering can be avoided if there’s awareness. I’m sure there’s many conditions that go undiagnosed, any information that I can get is greately appreciated. One never knows how a tip or idea can help . Thank you very much.

  4. Kyna Henderson said:

    Hi, my name is kyna. I just found out in June I have dystonia disorder . I have had several episode, and also hospitalized. I have the one that affect my face,and my walk. I would like to make friends so I know how to cope with this. Thanks in advance. I hope yo hear back about this disorder. Kyna

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