September is #Dystonia Awareness Month

September is Dystonia Awareness MonthAs anyone who has been following my blog for a while will know I have been diagnosed with generalized Dystonia, what you might not know is that September is Dystonia Awareness Month (it is also another awareness month for Polycystic Ovarian Syndrome that I have been live with for virtually the same amount of time only I was diagnosed with PCOS a good two decades before getting diagnosed with Dystonia).

Dystonia is a very complex, highly variable neurological movement disorder characterized by involuntary muscle contractions. There is no known cure, only treatments that target aspects of it but sadly there is no treatment plan that works 100% of the time for everyone who lives with it.

As many as 250,000 people in the United States have dystonia, making it the third most common movement disorder behind essential tremor and Parkinson’s disease. Yet despite it being the third most common movement disorder, it is also one of the hardest to get diagnosed with, the average person takes a decade to get properly diagnosed. It took me just over three decades to get my diagnosis and I feel I got it on a fluke by having a full episode happen during a nerve condition test (NCT).

The doc who did the test had done one before and not triggered an episode and had sent me on my way as nothing being wrong, yet two years later he did the same test on me and it just happened to trigger things into action right there in front of him. It was that day that I got told “Do You Know What Dystonia Is?” “Look it up” on that day he entered into the medical records that I have Generalized Dystonia.

Sadly for me, the treatment options are few and far between, and the most common drug treatments for it well the most common one has left me virtually unable to walk because it effects my muscles ability to function and thus walking that was already a problem has become impacted to the point that I really need to use a wheelchair to get around because my legs are not reliable to do so.

I stopped the drug, but the side effects from it relaxing my muscles are still impacting my ability to move my legs, so I have no timeline of when I will get full function back to my legs if ever. Also to add insult to it the movement disorders doc wants to keep me on the drug instead of exploring other options that might have a better outcome, something I do not support. I stopped the drug because of the loss of my legs to it, I don’t need more complications from the drug then I already have!

But so far he is not listening and I am in the process of trying to find another movement disorders neurologist/specialist who is willing to take me on, but it is proving to be difficult thanks to COVID. Will post more as time passes, take care everyone!

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