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Serenity Now

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About Serenity Now

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    In Limbo USA

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  1. Matt, To answer your question, I have no dx. I have no clue what I have. My symptoms started my mid 30s. I've been an insomniac for a decade from what I remember. But people are telling me it's been longer. I lost my sense of smell about 8.5 years ago. My handwriting became small and cramped. I remember when it changed 7 years ago because a co'-worker, who started when I did, kept commenting on it, calling it chicken scratch, and she and others kept teasing me about it. There are more symptoms years after. I disregarded everything, even when my arm stopped swinging last year and my vision became blurry. Only in Dec did I think something could be wrong after I had a resting thumb tremor, not pill rolling though, while my hand was on my stomach as I watched tv. I know it wasn't a twitch becsuse I get thumb twitches now on that same thumb sometimes. Shortly after that tremor my tongue started having involuntary movements all the time, and my teeth started to chatter all the time. That is the point I realized something is wrong. For now I'm holding off to see another Dr until my insurance starts. I've been doing what people suggested to just live life and not focus on my symptoms. Some days it's hard when my neck is in so much pain or I can't open a jar or it takes me forever to get Ziploc bags open. But these are just my new realities. I hope someday I get answers. I hope you do, too. Enjoy your summer!
  2. Matt, Interesting study. Yet since the study subjects were diagnosed in 1994 and 1995, I wonder what the YOPD numbers would be today. I'll take that crystal ball to figure what the heck is causing my symptoms.
  3. Murray, Thanks for answering my question. Glad you found a neuro who recognized your symptoms right away, as others didn't, and helped you. I concur with how people wrote stress exacerbates symptoms. I just find it interesting how some neuros took a patient so seriously with many sudden symptoms that happened so quickly, like days. Yet other neuros don't recognize symptoms or they dismiss them. I guess it matters which neuro a patient sees. Lena, Thanks for your response. Interesting what you wrote about LRRK2 gene. I thought you were the one who suddenly woke up with symptoms you never had. Your story made me think of the Rapid Onset PD I read about. Thanks again to you both.
  4. Pabzie, Thanks for answering my question.
  5. For those who had sudden onset after a stressful event...How did you get a doctor to take your situation seriously to get a diagnosis? Did you have a Datscan? I don't think my symptoms happened suddenly, although some are more noticeable or didn't happen a year ago. I also had no stressful event, beside everyday life stressors. So confused why some doctors are so dismissive to some people.
  6. Hi JB and others. If you need a good laugh, check out the picture of this water tower. I didn't know how to attach picture, so here's the link. http://www.jsonline.com/story/news/local/waukesha/2017/06/01/village-sussex-residents-have-heard-water-tower-sex-joke-before/361377001/ Hopefully, I don't get banned for posting this. 😀
  7. Thanks again.
  8. Thanks. Funny you mention neuroacanthocytosis because I read about it months ago because some symptoms match, but I don't have chorea or psychiatric issues. I won't speculate anymore. People like me, in medical limbo, have to speculate and do our own research because some doctors are quick to say it's in your head and dismissing patients' symptoms before taking symptoms seriously and excluding all causes. Your patients are fortunate you are not like that! The two doctors I saw didn't care what this tongue thing is. In addition to my blurry vision and unsteadines on feet, this is a concerning symptom because it is not normal. Yet I could care less about some symptoms, like how I lost my sense of smell so many years ago and my arm stopped swinging last summer Thanks again for your time and answers.
  9. Matt, I am sorry that you're in a tough situation. Call 211 to locate community resources in your area. Also, contact St. Vincent De Paul. They may be able to help with food, utilities, gas/bus vouchers, clothing, etc. Good luck!
  10. Otolorin, I have Googled neurological and musculoskeletal conditions that cause loss of arm swing, but nothing comes up except for PD. Thanks.
  11. Ellaangel, You are exactly right on all points! We know when are bodies are off. I wish some doctors had your compassion. Thanks and hope you get answers to your symptoms. Stump, There's no problem with strong opinions. I was refering to heated discusions that become that cruel and petty. I should've conveyed it better. For what its worth, I don't think in any way you ran off the OP in other thread, as you noted in that thread. You make great points, especially about waiting til I get insurance. That is the most logical, especially with the new health care reform. You're right, I may not have PD, and I'm trying to keep an open mind. I just want my vision to focus again, my balance back, my body not feeling so much older than my age some days, to walk how I used to, to sleep, to have energy again, and this tongue thing gone since not sure how I can go to dentist with it moving. Thanks again to all! Enjoy your Memorial Day weekend.
  12. LAD, I called the helpline months ago, and the woman advised to try to get referral from PCP. Therefore, I don't know what more Dr. Okun could say since I'm facing the same situation with doctors that so many have experienced. You're always helpful to everyone on this forum! Miracleseeker, You made me laugh with the lottery comment. I agree with what you wrote. Thanks. Pathfinder, Thanks I know you and the other CG's, like Miracleseeker, have a tough time, as well as little time, so I appreciate you, Miracle and the other responders. Ellaangel, Yes, the tremor that came and went away was on my left. My thumb that has started twitching off/on is also the left one. Thank you all!
  13. Dianne, I just thought of this. I have never been diagnosed with anxiety or depression, nor have I been on any medication. If I come across anxious now, it's because I'm disheartened by the doctors of today. I was hoping for help and some direction, like many of you also were, but instead I was treated like I did not matter and my symptoms weren't anything. Many doctors are quick to say it's stress and it's in your head before they have excluded other possible causes. I have NEVER met one person who didn't have any form of stress in his/her life. That's life. Maybe I don't have PD, since I'm not presenting the typical way with resting tremor, but I can't dismiss my symptoms that are eerily related. I hope in no way I offend anyone since I'd hate to get kicked out of the forum. But I have to say this to anyone reading this, I am also disheartened by some disturbing posts, not just recent ones, but older ones. Sadly, some posts take away from what the forum should be, a non-judgmental place where people can go for support, regardless of different viewpoints. As I have posted previously, this is a forum with some really helpful people, so please don't misunderstand what I am saying.
  14. Manolo, Interesting topic you started. I hope you you and the others have a slow progression, too. Otolorin, Where can I find the information you mention about other conditions with loss of arm swing? I had no injury. Thanks.
  15. LAD, I am near a teaching hospital, but they need a referral to the neuro dept. That is why I went to a teaching clinic since that was my only option After the med students examined me, the 80 year old dr came in and said nothing was wrong. When I asked why my arm stopped swinging, he had the audacity to say I was doing it. Funny because when I noticed it, I did nothing about it. Then I asked about my tongue, he said he didn't know why it did that, nor did he care. I asked more questions, but he dismissed everything and again he said nothing was wrong. It was the med students who notified another doctor, as the clinic manager told me, since they found my symptoms disturbing. When i returned months later and saw the resident neuro, he didn't focus on my main symptoms. When he had me walk, he said to a med student, i had slight parkinsonian features. When he checked rigidity, he didn't check my left arm, side with all the problems nor did he move the other arm in a circle to check for it. I told the first dr my left wrist clicks when I move it, but he said it's normal. Hmmm, my right wrist doesn't do it. Sorry to go on, but I have no faith in doctors. Dianne, The limp, the shoulder pain and the loss of arm swing all are on the left side. I have been journaling my symptoms since tremor, Dec. I tried putting some symptoms in that website, but found it easier to just journal. Plus with no clue what I have, I don't fit in any category. Thank you all for your suggestions and input. I do appreciate it!!