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DiscussionTrouble diagnosing Parkinson's or other condition. Go to Mayo?
Parkinson's Disease | Last Active: 7 hours ago | Replies (53)Comment receiving replies
Replies to "@chrissyv153 It has been a while since you first posted. Have you found any relief (or..."
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@hopeful33250
Hello to all who responded to my post, and thank you for your support and kindness.
I am sorry to have just dropped off the radar. It has been a very long and challenging 6 months.
In July, I saw a neurologist at the Mayo Clinic, who also conducted some in-office physical and mental testing. After about an hour, she confirmed a Parkinson's diagnosis, much to my surprise, as I thought I passed all the tests with flying colors!
Then began the nightmare.
Shortly after my appointment, I started experiencing terrifying panic and anxiety. I was prescribed hydroxyzine, which only works by making you sleep, and when you wake up, you're exactly in the same place of terror. Then clonazepam, same thing.
After much research, I quickly learned that Parkinson's is not only a physical disease but also a mental disease, and that many people with Parkinson's experience this.
From my research, I also saw that many Parkinson's patients were taking the antidepressant sertraline for panic and anxiety. My neurologist wanted to start me on carb/levodopa but I knew I needed to address the panic first.
Apparently, my neurologist was unfamiliar with antidepressants and the effect they have on treating Parkinson's panic and anxiety.
I reached out to a local Dr. of Psychiatric Nursing for help. She saved my life.
It was all I could do to drag myself up to the computer to communicate with her through a patient portal. At this point, I couldn't be in the same room with my family and hear them talking or tolerate ANY noise. My husband couldn't leave the house, and I couldn't be by myself
but had to be by myself! I was literally in bed all day.
My Dr. prescribed sertraline. To make a very long story short, the medication made the panic and anxiety much worse, even though we titrated very slowly. Many people can't tolerate the horrible side effects of getting on this medication but knowing that it was prescribed routinely to Parkinson's patients, I had to try. The medication can take months to work-or not! I was very sick with unbearable panic, nausea, brain zaps, hot flashes, chills, dizziness, and uncontrollable tremors.
It took me about 3 months to start feeling better.
I take 62.5 mg of sertraline a day and am also taking carb/levodopa 25/100- 2 1/2 x a day.
I am better.
I do still wonder if I have Parkinson's or some other movement disorder.
Does Parkinson's anxiety cause my tremor? Or does my tremor cause my anxiety?
Which medication is helping me the most? All questions that have no definitive answer.
I would like to have the SYN ONE skin biopsy test for Parkinson's. Mayo doesn't endorse it, but my neurologist is willing to do the test sometime in the near future.
The pain in my arm has subsided- now I'm PAIN IN THE NECK!!!! ha
and I have regained some use of my right arm and hand and am able to wash my hair and brush my teeth again with my dominant hand.
This is a very long journey to diagnosis and proper treatment, but you have to stay strong and resilient. Ultimately, you have to be your own advocate and never stop researching and looking for answers. There were many times I would say to my husband," I can't do this anymore, you have to call 911 or take me to the emergency room!" But what are they going to do?
Like Michael J. Fox says, "Who are you going to call?"
I do believe in the power of prayer and have many brothers and sisters in Christ praying for me.
The Lord is good!
Thank you all again for reaching out, and do keep in touch,
Chrissy