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

What caused my Dystonia?

Since Dystonia started affecting me nine months ago, I  have often asked what caused it? I have accepted the fact that I have Dystonia, and why it is me that has it is no longer important to me. What does matter to me is what has caused it!!

I understand that Dystonia is caused by a part of the brain called the Basal Ganglia sending out the wrong signals, but what caused it to do that? Is it genetic, do I have a gene mutation, is it due to dopamine, have I fell and landed on my head to many times? It may seem like a trivial thing to dwell on, as after all knowing why/what caused the Dystonia, does not change the fact that I have it, all it may do is change my treatment plan. Yet it remains an important issue to me, I need to know what caused my brain to stop functioning the way it should.

What I cannot understand either is why the Doctors do not want to find out the cause? I had a CT scan done back in August which confirmed that there was nothing structurally wrong with my brain. Knowing that is great, it’s a relief and something that I can strike off as a probable cause. However beyond this scan no other test has been done, so how can they treat me if they do not know the cause? I know in many cases the cause is not always found, however surely the logical thing to do would be to test for gene mutations, trial me on levadopa etc, check that there is no cause which would require a different treatment plan, before trying and the majority of the time failing, to control my symptoms?

I try my best to avoid thinking about what has caused this, as I understand that I am unlikely to get an answer any time soon, but that does not stop me wanting it. All I can do is hope that a doctor will eventually test me for possible causes. Even if an obvious cause can not be found, I would be much happier knowing that they had at least tried!

So for now, I shall cross my fingers and hope that I will one day get the answers that I need. Until then I shall continue to press my doctors to carry out the tests, until they decided to listen to me.

 

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Comments on: "What caused my Dystonia?" (3)

  1. I agree its so frustrating… we have the same question, was it the electric shock ? or the strep infection ? the neurologist thought he may have been predisposed genetically for the infection to cause it. He has had some genetic testing, nothing positive as yet. I hope in time you get the answer x

  2. There are so many causes for dystonia it is really very hard to pinpoint the culprit. Trauma to the head,toxins,fumes, medications,genetics. There is a serious of tests offered at Vanderbilt Medical Center to attempt to distinguish primary and secondary dystonia. If one or the other can be determined,then it makes it easier to track down a cause.

  3. My dystonia was triggered by extreme stress at work. Not to the extent of yours – but it did see me loose my job. Stick with it. You are doing great.

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