Confused and scared
Hi y'all, I have shared my story here when I joined a while back. Now with the COVID-19 I have been working from home.
Now, I'm confused because my neurologist had first diagnosed me with ET, We tried the BP meds to see if it would help and it didn't. She had asked me to video when having tremors and I did. When I went back she said it doesn't really look like ET, but it could be early symptoms of PD. She tried carbidopa/Levidopa for a week and referred me to see a MDS. My video appointment is tomorrow, which will be weird, because she'll be examkng me his video đ¤đ¤ thanks to COVID-19 While on above mentioned med, I did noticed improvement in as fast as 30 min. But then when waking in the morning, my tremors seemed a little bit stronger.
Last night, I had a dystonia episode of my right foot, where this time it turned my foot totally inward. My anxiety levels are off the roof!!!
I wanted to ask anyone, if they have experienced a distorted sense of smell. I keep smelling things, a specific "cheaplike perfume" scent and my hubby does not smell it. I lost it and started crying, hubby being his wonderful self, held me tight, comforted me, then ran to the bathroom to get some of his great smelling cologne and put a little under my nostrils. I love this manâ¤ď¸ But has anyone experienced this before?
Thank you in advance for listening,
Neidalyn
Thank you Jessica Hall, I appreciate you sharing the article. My situation is smelling something not there, does that fall under loss of smell?
Hello Chris thank you for the information shared! My virtual appointment went as I expected, due to the COVID-19. A video first consult does not provide the doctor a good examination vs a person to person visit where she can perform the exam. We made a follow up visit for a person to person consult for June. However, she did refer me for a DatScan and a speech pathologist consult.
I am really struggling here and have emailed both my psychologist and psychiatrist, because I'm simply losing it, I am frustrated, scared and hopeless. Of course, I would love to hear "You do not have Parkinson's", however my symptoms are so over powering and like I told her, I am battling, fighting the tremors all day long, and that leaves my left side feeling exhausted and weak!
Thank you agai for listening and stay safe and healthy!
Neidalyn
It's great to hear that you are taking the steps to be proactive with your mental health, Neidalyn. I truly hope they're able to provide you with some insight to manage these feelings. Appreciate your well wishes and I hope the same for you, and that you're able to get some rest over the weekend. Take care! - Chris, ParkinsonsDisease.net Team
Neidalyn, I understand your frustrations as you have explained them. I was hoping for a diagnosis of essential tremor but fully expected to hear the doctor say it was Parkinson's, which he did. I have lost most, if not all, of my sense of smell but have not experienced what you described as smelling something not there. Please know that if you receive a Parkinson's diagnosis for certain, that your movement disorder specialist will help find the best medicine or mix of medicines for you. Without meds I have left side bradykinesia which especially affects my hand, leg and foot, back rigidity when I walk more than two miles, and left hand tremor. With my current medications, no one would think I have Parkinson's. There are many informative and supportive blog posts on this site. I hope you are soon able to feel less mental stress. I find that focusing on positive things, writing in a journal specific to my PD experiences, exercising (lots!), calling a friend, and doing something mindful (yoga, meditation or prayer, sketching and such) each day is very helpful. I hope you soon find what helps you. ~Lorraine, parkinsonsdisease.net moderator
Hi Lorraine, God bless you!!! I am hanging in there and trying to stay positive. This past Monday I re-joined my church's praise team and sang a couple of songs. My struggle has been the tremors being noticeable to where I am now either putting my hand in my pocket or holding my whole left arm down to control it. Also the pain I get from what I call fighting my left arm all day. I can feel the tremors and as I fight to control it, when I finally let my arm resist it, my arm feels so weak and my shoulder and neck is so tight from trying to control it. I know many tell me to ignore it, but it is so frustrating when I am going through my day and my left side wants to be independently flailing around.
I finally have 3 appointments set up 2 in June, Speech Pathologist and actual in person visit with MDS, which I am relieved because on my first consult with her, we tried doing it virtually and she could not actually perform an in person exam. Also I have scheduled the Dat Scan for July 29th.
I want to thank you so very much, your words were God sent and I am working on my mental state daily so not to fall into the well of depression, which likes to constantly sneak its ugly head in, I so appreciate your message. I feel like no one can understand what my body is going through so the support I find in this forum is a blessing for my sanity. Thank you!!
God's Blessings Always,
NeidalynNeidalyn,
Well, here we are in Mid-June and I hope youâve already had your appointments or will have them soon. I sense a more upbeat tone to your post of May 28 and am grateful for that. Boy, do I remember the energy depletion of trying to control tremors, etc. I donât like having Parkinsonâs but I certainly appreciate how the right meds help. Keep on learning, ask questions, and be sure to find an outlet or two that you enjoy. Keep singing! Lorraine, Parkinsonâsdisease.net moderator
I have a pt person that told be today that she has a certain type of a symptom from COVID thst caused her ti smel stuff tha isnât that isnât there â
