Courtesy of the Crown

"Life is rough and tough like leather"

Me and Dystonia

I just noticed that there are quite a few blogs devoted to Dystonia which I think is awesome. The reason why I didn’t do it with my blog is because for me as a person, my situation is overly complicated. Treatment has been a difficult thing and chose to do more poetry to keep my mind off the Dystonia. However, I could have two blogs and just devote the other one to just my dystonia. I just thought about that. hmmmmmm? Might be a good idea but it would take me a minut to set everything up and get followers and so on. It would be a challenge but it wouldn’t be too hard.

Today, I’ve decided that I will post more about how I am doing and where I am currently with this illness. But I want my blog to be random and I post things that way on purpose. Part of me coping with my current condition. I am also about ready to change this theme. As a friend said, it doesn’t seem to fit me. I agree.

So from now on, I post about my battles with dystonia and may add a few more videos if I can. I have been having a terrible time walking as I mentioned and I have also begin to start shaking when I get too stressed. My left leg has began to twist even more but it doesn’t hurt. Just makes it harder to walk and throws my balance off. I have decided to keep taking the Klonopin. I have developed a system over the past few days. It seems to be working pretty well. I am rotating between Klonopin, Zanaflex and Sinemet. This has straightened my legs out quite a bit. As for the pain, it is still there but I know it will probably remain.

I am being tested for ALS on May 17. Although the doc doesn’t believe I have it, he does want to rule it out. We have ruled out almost everything else. I have found a Dystonia specialist in my area and am trying to get an appointment with him. He specializes in Dopamine Responsive Dystonia so I hope he can be of some help to me. I have found a new Neurologist but she is booked until June. She is a great doc and my daughter just adores her. She is well worth the wait.

Well that is all the new information I have for now. Still learning to deal with this shaking and getting some info on a few other things. Whatever info I get, I post it here. The poetry will continue though as it is my outlet and keeps my spirits up.

-MOON-

Bottoms Up!!!!!!!!!!!

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9 thoughts on “Me and Dystonia

  1. MS, Fibromyalgia, Dystonia? No. No one gets all these random conditions for no reason. If you check my blog or even my blog tags, you may notice a few things. I am so sorry you are going through this and that no one has told you this before: Get tested for Lyme disease and the co-infections (horrible infections that travel with in the same tick) via IGENEX laboratories–scarely any other lab can pick it up. I’ve seen this all before, in myself and others, especially the Dopamine-Responsive Dystonia which both me AND my best friend have all signs of, because of LYME DISEASE. It’s not just some mild infection people rarely catch and then get over with a couple weeks of antibiotics, no no no. Visit here for the real facts – http://www.ilads.org/lyme_disease/about_lyme.html – and do you and your future a big favor and get your doctor to test you via IGeneX. :\ The absolutely worst part is that untreated Lyme disease can be passed on from mother to child (and my eosinophils were very elevated with my own infection, which scares me for your daughter that she may have it, too). You may need a Lyme specialist to do the testing if your own doctor won’t do it (some ignorant people think chronic Lyme doesn’t exist–they think I’m DYING from something that doesn’t exist!) and there are places to find those wonderful doctors, too. You can e-mail me if you want to talk. I’m 99% sure you have this dreaded disease.

    If you don’t beleive me, watch Under Our Skin (free on hulu.com, I think). Or google “Lyme and dystonia” and “Lyme and multiple sclerosis”–I hope you’ll take this step for your own life, and again, I am so sorry you are goign through this. ((((Hugs))))

    • Thank you very much for your concern. Problem is, I already got tested for this and the test was negative. There is no possibility to be exposed to Lyme disease in my opinion because I never leave the house and there aren’t many ticks where I live. Not that I could be exposed to. I have been tested for Lyme, sjogrens, lupus, and a boat load of other illnesses. The test were negative. My mri’s are clean. Of all the test I have taken, the spinal tap was the only abnormal one with 5 bands. That wasn’t enough to figure out what is wrong with me.
      Now I have been bitten by some spiders but I had the Lyme disease test done since that happened. My doctor years ago believed it was Lyme but ruled it out with the test. Thank you so much for responding and stopping by my blog. Your advise is appreciated. This has been going on since 2003. They are running out of things to test me for.

      • …I don’t think you clicked the link I gave you, or you would have read that the test is terribly inaccurate. That is what leads so many doctors to think it doesn’t even exist. Even the CDC themselves say the regular test doesn’t work. There aren’t many ticks where I live, either–I am in Louisiana, and got it. :\ A negative test just doesn’t mean much, unfortunately. I can’t say that enough. Basing a diagnosis on a test that isn’t accurate, is terrible logic, especially when basing one’s life on it. I’ve been tested over a dozen times and only 1 came back positive. (But I knew better, and I had found a doctor and started a trial treatment BEFORE the tests eventually came back positive instead of waiting for them to do so; actually a lot of people find they get positive tests AFTER starting antibiotics, because of the drugs stimulating the immune system.) My Lyme tests only showed one band at first, and then later on, five bands, which ironically still wasn’t enough to be considered positive by many doctors, but when you have all the symptoms I do, then yes. And all the symptoms you do, then yes. Lyme is diagnosed clinically, which means you treat it based on symptoms, adn if you can get a positive test then good for you, but if not, that doesnt’ mean it’s not there.

        It really is up to you. I hope you’ll make this decision as soon as possible. When you get at the end of your rope, perhaps you’ll visit an LLMD/Lyme Literate Medical Physican, who will be able to help you. At least someone would have told you about this scenario which you weren’t previously aware even existed.

      • All of what you are saying makes good sense. I’ve been bitten by things that I did not see. However, a LLMD would nearly be impossible to find in my area and traveling out of state for me is not an option. Since you have taken the time to tr to explain this to me, I will tell you something that not to many people know. Although I have no idea who you are, you seem to be very knowledgeable on the subject.
        I went to court to fight for my RSDI. The medical examiner examined my records and he said the same thing you are saying. Possible Lyme disease which may be infectious. He also said that I may have possible brain damage. I informed my docs of this and each and everyone blew it off as if it wasn’t important. They even said that the medical examiner was possibly exaggerating. You are right. I did not follow the links you provided because I can’t deal with the stress right now. Are you on Facebook? This conversation is very helpful but really personal. Too personal to post here.

  2. Pingback: Hey you! « Diary of a Misdiagnosed Chick

  3. Your blog, your rules Moon. We’ll keep showing up either way.
    gotta say again, I love that your doctors are actually paying attention to you and that you like them.
    Hoping htere will be a breakthrough! And maybe stress to them to look at the lyme and other possibilities again if it is even a possibility and the tests can be inaccurate…
    Hey, can’t hurt…

  4. Pingback: What next? « Diary of a Misdiagnosed Chick

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