Wednesday, March 28, 2012

Explaining Dystonia To Everyone Can Be Exhausting

Now that I knew I had cervical Dystonia and was getting treatments for it, I now had to explain to everyone who was there for me through all the years I was going through pain and searching for an explanation, what Dystonia was.  No one had ever heard of it.  I was asked to say it over and over again, spell it out for them, and then explain to them one more time what it was and what kind of treatment I was getting for it.  Some people were so glad that I was finally getting treatment, some made jokes to make light of it, and some made faces and tried to suggest that perhaps certain vitamins would actually work the same as Botox. LOL 

What bothered me more than the funny faces people made or the strange comments and suggestions they gave me, was that I had to tell everyone what Dystonia was.  Yet, I'm finding out that hundreds of thousands of people are suffering from this disease and getting treatment for it.  After speaking with Dr. Schwartz and doing more research online, people are being misdiagnosed every day.  There are a lot of doctor's out there that have never heard of Dystonia.

This baffled me!!!! If someone comes in your office with a condition that you're not sure of, I can understand that you try a couple of different treatments to see if you can narrow it down.  However, if that patient still isn't feeling better and their conditions are either the same or getting worse, one would think that the doctor would take the time to reach out to another doctor or refer you to another center and see if there's someone else who can put a name to what you have. One of my misdiagnosed experiences was when a spinal surgeon, after reading an x-ray he took of my neck and spine, said he didn't "see" anything on the x-ray but since I was feeling spasms he wrote me a prescription for a muscle relaxer and physical therapy.  Why didn't he think to send me to a neurologist?  It was obvious that if nothing showed up on an x-ray that it could be neurological, right?

That's when I went online to DMRF, Dystonia Medical Research Foundation, and ordered pamphlets to mail and handout to doctor's offices, or to anyone who never heard of Dystonia.  My thoughts were that if I could make others aware of what this debilitating disease was, I could save another person the heartache of being misdiagnosed and have them on the road to recovery quicker.

I went online and found this..."As many as 250000 people in the United States have dystonia, making it the third most common movement disorder behind essential tremor and Parkinson's ..."


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