What is Parkinsons Disease
Parkinson's disease (paralysis agitans or PD) is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement (bradykinesia), and in extreme c...
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Just came back from the Neurologists office and...
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Wow, that was horrible. I was just told that not one of my symptoms was a PD symptom. Not one. Hm? I was told that I probably have Myasthenia Gravis (again) and when I told her that I've already had all of the tests for that come back negative, except for one, (the LEAST definitive one, at that) she told me that that didn't matter. I couldn't possibly have PD. Period. End of discussion. She didn't even listen to my whole list of symptoms. I made the mistake of saying that I sometimes have muscle weakness (or at least that's what it feels like me) and she was done. Checked out at that point. Told me that without a doubt not one person with PD has ever had muscle weakness. "It's the exact opposite." she said. So, my choice of words has doomed me with her forever.
Now I'm back to square one. She won't increase my Sinemet because "I don't need to be on it" (Even though it's the only medication that has ever helped me.) and she doesn't even want me taking the Mestinon that helps keep my BP up (that's an MG med!!!) because that med is also "not safe". She told me that my inability to swallow was BECAUSE of the Mestinon....that I barely ever take and was completely off of for nearly 2 years. Still couldn't swallow. Was told that difficulty swallowing and speaking was NOT a PD symptom at all, ever. None of my symptoms were. Am I missing something? So depressed, I could just die.... Rebecca Posted on 06/11/09, 06:06 pm |
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Becca, do you know what they call the person who graduated last in their medeical school class? doctor. If the dr. is that clueless its time to find one that specializes in motion disorders and pd. They work for you. Stay well, you are not alone. alex 
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Oh Becca, I am so sorry. My GP said that the first neurologis that I visited had his mind made up before I entered his office that I had essential tremor. When I first arrived at his office he did not even say hello or introduce himself, he just said "did you know your head is shaking". When I staggered when walking a straightline and had to hold the wall while balancing he said that was normal. I kept asking him about my back pain and he said it had nothing to do with essential tremor. He dismissed me as an anxious or depressed woman and said "go back to work there is nothing wrong with you"! Both my GP and my Osteopath apologized for his behaviour and were dumb founded by the remarks he had put in a letter to them. So I went for a second opinion which luckily only took three months to get and was diagnosed with Parkinson's Disease. I lucked out with a wonderful neurologist who listened to me. My mom had also told me to write a diary of my daily issues. She typed this out two weeks for me and I handed it to the doctor. It really helped. I am taking no PD meds (do have pain medication for my back) but am taking CoQ10 Ubiqinol (Ubiquinol is the Next Generation of CoQ10 and is the Active, Antioxidant Form of CoQ10, and is the Strongest Lipid Soluble Antioxidant Available) and have noticed that a lot of my symptoms have either disappeared or are not as bad. This I purchase at a health food store so maybe give it a try. In the meantime, please try another doctor!
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Hello Becca!
Hang in there! and don't give up. Hisknobs's reply has a lot of sense! I have a lot of symptoms that are CLASIC PD symptoms and I saw a neurologist at the UofC Health Science Center and he too would not listen to me. I was told by him that I have BFS (Benign Facisulation Syndrome) and that by Bradykenesia symptoms are simply due to stress and depression. I was actually refered to a physio therapist! and my right hand tick can be cured with therapy and puppies and sun shine! WOW! what an idiot! I then went to my GP and showed him highlighted sections of medical text books indeed indicating me actually having PD and NOT BFS. I am now being referred to a Mobility Disorder specialist. Strange that I have seen a Physio Therapist and 3 nurses and they ALL say I have PD. Exactly what I have been claiming for 4 months now! Hang in there gal! and be well! Len...
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I am so sorry you are sad. It is very confusing and your Neuro treated you poorly. I pray that very soon you will find accurate answers. I totally resisted Sinemet and it has been a mirale for me. Hang in there.
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Becca,
After reading your posts you may want to do an internet search for Parkinson's Plus and look at the different syndromes, MSA being one of them, you might find some useful information there. I would recommend a movement disorder clinic for a proper diagnosis.
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Since I've last posted, I have figured out a lot. I've found out what "atypical Parkinson's" is and it does sound like my issues, for sure. Seeing as how I've had ADEM (a severe brain virus, that has a very high fatality rate) and been in several extremely bad car accidents, in which I wasn't restrained, no less than 5 times (I was young and stupid and didn't realize that hitting my head so hard on a windshield when I was a teenager and in my 20's could cause later issues.) I've been reassured by my PCP that that lady was a quack. Apparently, either one of those things could have caused APD, alone.
AND- As fate would have it, as soon as my husband had hung up the phone with me (from me telling him how horribly the Neurologist appointment went) he literally turned around and there was this man standing in front of him. Lo and behold, this man was also a Neurologist. He worked where my husband was and asked him a few questions about me. DH explained the horrible time I've been having and he was very interested in speaking to me on the phone - FREE OF CHARGE!! He knows a lot about APD and said, without a doubt, that my life history makes me a perfect "candidate" for the syndrome. How crazy is that? So, I'm going to call him on Monday and see how it goes!!! Thanks to everyone who has been supportive and listened (read) to my complaining and stress. It's very nice to have a safe place to go and visit with people who really understand you! Have a wonderful weekend everybody!!
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Super !
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6 yrs ago i was diagnosed with what they call hahaha the goodkind of Pd
Stiffness ragidity , change in gait ect ect. Some where along the line you learn to paint within the lines and stll come up swinging. Still praying and search for things to make my life simpler . One of the things I made and make certain I am not going to make my loved one miserable because I am having a bad day. peace yoohoo
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