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Serenity Now

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  1. 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.
  2. 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!
  3. 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.
  4. 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.
  5. 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!!
  6. Dan, Thanks so much for reading my post! It sounds like you have a great doctor, who listens to you. I haven't had a primary doc in a years. That is part of the problem. I lost my health ins after I was laid-off from my wonderful non-profit job where I had fantastic insurance. I'm no longer working in that area. The company I work at now offers no ins. I''m starting a new job next month that will offer ins. ACA was way too much, so it's been over a year since I went to a dr, before I saw the doc and neuro months ago who said it was in my head. Like many without ins, I didn't go to dr. The primary doc I saw is also no longer in my area, so I have no history with a doctor either. Thanks again!
  7. I am not sure what to do and would appreciate your input. I have no dx related to the majority of my symptoms besides the ever so popular "there's nothing wrong" and "it's all in your head". Something is wrong. Like many, I ignored symptoms for years, thinking nothing was wrong. My first symptom was insomnia, starting at least 10 years ago. My left arm stopped swinging last summer; plus more symptoms between and after them. I had a complete metabollic blood test, and they tested for diabetes, thyroid, vitamin levels. All normal. I know some of my symptoms may not be related, like my neuropathy issues or tinnutis and hearing loss in one ear. But I think most are. I just don't know to what, not looking for dx, as I know you can't. The MDS' I contacted near me needed a referral. I found one who would take self-referrals in a different part of my state. I made an appointment months ago. When I asked for the approximate fee, since paying out of pocket, I was told someone would contact me. I left 3 messages about cost and no one called me back. I also tried calling other times and was told someone would call, but no one ever did. The no callbacks and reading these horrendous stories about some doctors and my own experience, made me nervous, so I cancelled it. I don't know if I should reschedule or try a neuro, who my friend sees that specializes in migraines, to try to get a referral to a different MDS or try to go the long route and see another regular doctor. I'm in a quandry. Any thoughts? Since I first saw the dr and then the neuro, I am not feeling better, although I'm trying to exercise more, keep stress down and eat healthy. In fact, I feel worse. Below are my symptoms that I believe are related to whatever I have. Warning it's a long list. Insomnia, loss my sense of smell, handwriting became small and cramped. unsteadiness on feet and coordination issues, take smaller steps than I used to, balance issues, can't ride a bike anymore even though I did for 40 years, fell but those could be a fluke (in shower & near car), have woken up to either my legs kicking, my hands hitting the wall, my fitted sheets half off the bed. my lamp down on the floor, facing the opposite side in bed (head where my feet normally would be), have weird dreams that are so vivid and get dreams within a dream, stomach issues, fatigue, blurry vision, walk is off and limp, shoulder pain, loss of arm swing, internal vibrations, unexplained weight loss, had resting tremor for a few weeks (not pill rolling, though), teeth chattering all day, abnormal tongue movement, reduced blink rate, red/dry eyes, dizziness, fine motor skills affected, thumb twitching, a few fingers moving left to right and pain. Pain from tight muscles, feels like someone is twisting arm or leg, like the old snake-bite game where someone twists your arm til you cry, pain from the worst charley horses ever (thankfully it seldom happens), pain from stiff neck and severe pain in the back/side of neck now. Ironically, my neuropathy symptoms, which were the main thing Doogie, young neuro, focused on, are the least of my issues. But I think that's why I have reduced reflex in one leg, burning sensation in face and numbing/tingling mainly in feet/hands. Again, I'm not looking for a dx, I just don't know which route to take for a doctor. Thanks in advance!
  8. Another awesome quote, LAD! I loved Mr. Rogers. He taught me how to tie a shoe. He was the eptiome of goodness. Ellaangel, I agree with you that we're meant to help each other.
  9. Shakes, That must be so difficult to have those cognitive issues at your age. I'm not much older than you, so I can imagine how frustrating it is for you. I only have mild brain fog, so although I can't understand or give you advice, I do empathize with you. While I have no dx, except that my issues are in my head, I understand what it's like to have your body feel like it's betraying you and getting annoyed, frustrated or sad because of the changes. I am sorry you came here to vent, and you were told you're a fool, moron and that you need to be nicer to your wife all because of a joke. Yet I can see how the first two may not have known it was a joke, and Dave could have posted his reply as you did. Plus, I know sometimes context can be misconstrued online. But I have read your post a few times and see NO reason to assume you don't appreciate your wife or don't already treat her nice. I don't normally respond to posts because I am in limbo, and I'm probably not wanted here. Yet I hope you realize this is a wonderful forum with lots of helpful people.
  10. Linda, I am very appreciative to you and Patriot for your information. Glad you found it informative. Patriot, Thanks again. I understand it more now. I was looking for another cause for my loss of arm swing, but never heard anyone w/Lyme having it, so also thanks for mentioning it's not a Lyme symptom. Drummergirl, I have read that besides the bullseye rash, some with Lyme can get lesions, skin infections, dermatitis or what resembles it and a rash that resembles Lupus.
  11. Linda, Thanks for responding. I was just curious. I realize you may never know for sure.
  12. Patriot, Could you please elaborate on how you noted many PD symptoms are different from Lyme? Are you referring to the flu and skin symptoms? I've read on sites how Lyme mimics PD; see link below. Even Dr. Okun noted on March 2, 2007 that Lyme can cause Parkinsonism but not PD, so maybe I'm interpreting incorrectly. Now I'm confused. http://www.parkinsonsresource.org/general-information/lyme-disease-a-parkinsons-imitator/ You are very fortunate to have had the treatment in time. One man died of Lyme after he first waa diagnosed wirh ALS. http://www.huffingtonpost.com/david-michael-conner/man-diagnosed-with-als-di_b_8891262.html Linda, Do you think your Borrelia caused your PD? I thought the article below was intersting. https://www.holtorfmed.com/lyme-disease-and-parkinsons/ I talked to my friend with Lyme, who lives in a different state, and she never went through the tests because it's so expensive and her insurance wouldn't cover it. But her last doctor recognized she had all the symptoms, so they treated her. I did contact a ILAD's doctor, and it's $1,000 for testing. Wow! He is an expert in Lyme. I am starting a new job soon, and will wait to see how the insurance is before I get tested. My current job offers no insurance. When I wrote I had no joint pain, I wasn't thinking about my shoulder pain that started last year. I was thinking of joints as wrist, elbow and knee. Stupid me. I also now get intense neck pain in the back of my neck and more stiffness. Sometimes my neck feels like it's stretching or pulling. Weird I know. Have you ever heard of Lyme causing loss of arm swing?
  13. Patriot, Wow, what an amazing story! Thank you so much for the in-depth response and for telling your experiences!! That wins my vote for post of the day. Glad you are in remission from LD, so it doesn't compound your PD. Thanks for the link. That guys arm is disgusting. What a horrible battle you endured to get your LD dx. 50 tubes of blood, yikes. Good to know about the type of doctor to see. You're right about the misdiagnosis. I'm astounded at how many diseases mimic Lyme. My friend was finally diagnosed with Lyme after a 20 year search. She, like you, had the joint pain and flu. I don't and never did have jolnt pain, and I can't recall when I last had the flu. She was really sick for awhile, too. My most bothersome symptoms don't really come and go, but rather they may not be so bothersome some days. But little changes happen, like for weeks, I had a super dry mouth, but now my mouth has excess saliva. Six months ago my legs/arms sometimes felt tight, but now my thighs feel constantly constricted. I have more stiffness than I did then. If I sit for more than an hour, I walk really odd. I read an article on how MS is really Lyme, so it's interesting you noted similarities. I'm not sure if I believe rhe article, but nothing would surprise me with big pharma. I have no questions now since you explained it to succintly. You made me laugh so much about Al Gore. 😁 Thanks again to you and Linda. You both helped a lot.
  14. Patriot, Thanks for the information.
  15. Linda, Thanks for the information. No, I have no skin type symptoms, nor do I have joint pain, which I thought is a common symptom of LD. I agree with Otolorin; what you posted is interesting. Never heard of that.