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Living with Parkinson's Disease - Meet others & come say hi

Parkinson's Disease | Last Active: 13 hours ago | Replies (520)
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@sherrieshe

I will be 61 November 24th I started slight jumping and shaking in my left fingers back in 2012 but it didn't happen often so I thought it was nerves. That went on till 2018! Of course it was a little worse each year. Then in 2018 I found it harder to get in and out of my car and much harder to turn myself in bed. I fell when there was nothing to make me fall. My legs would get so tired when walking any distance. Then one day the shakes were so bad I felt like I was shaking inside as bad as I was outside. I went to my family doctor that day. He took one look at me and said I had Parkinson's. He sent me to a neurologist. A brain scan was done but that showed nothing which only helped me to think that it could not be PD. I was prescribed Carbidopa- Levodopa by my neurologist but that made me crazy. He then tried another PD med which was just as bad. I had bad dreams. I would wake up screaming and often woke up because things were flying at me that were not there. When I told my neurologist this he stated "Well the PD meds would not do that so you probably don't have PD"! His comment only helped me to believe my Family doctor was wrong with his PD diagnoses. Right now I am only taking meds for tremors as I refuse to take the others because of the things it does to me and makes me feel. So I feel in my heart it is PD but I am still fighting it in my mind. I live in a rural area in Northeast Pennsylvania so the selections of doctors are very slim here and due to the Virus I have had to cancel 2 appointments in Rochester New York.

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Replies to "I will be 61 November 24th I started slight jumping and shaking in my left fingers..."
Teresa, Volunteer Mentor | @hopeful33250 | Nov 1, 2020

Hello again @sherrieshe
I appreciate your sharing a bit more information about your symptoms, meds and diagnosis. Sometimes it is difficult to get the right dose of meds. If I may ask a question: when you started taking Carbidopa-Levodopa did you titrate the dosage? For example, when I started the med (I was about your age at that time), I took a half tablet once a day for a week, then the next week I took two half-tablets once a day for another week, etc., until I got up to 3 full tablets a day. If you did not titrate the dose (but took full tablets every day) that might have caused some problems. Also, could you speak of what specific med you are taking for tremors?

The falling and tremors certainly are symptoms of PD. When things settle a bit, I would certainly recommend that you seek the services of a movement disorder specialist. This type of specialist is a neurologist who has had specific training in disorders like PD. They are trained differently than a general neurologist.

In the meantime, here is some information about PD that might be helpful to you, https://www.parkinson.org/? from the Parkinson's Foundation website.

I would also encourage you to look at the many discussions we have about Parkinson's here on Connect. There are discussions about speech and swallowing, https://connect.mayoclinic.org/discussion/parkinsons-and-speechswallowing-problems/; constipation, https://connect.mayoclinic.org/discussion/constipation-and-parkinsons/; handwriting problems, https://connect.mayoclinic.org/discussion/parkinsons-and-activities-of-daily-living/; breathing difficulties, https://connect.mayoclinic.org/discussion/difficulty-breathing-autonomic-dysfunction-w-pd-congestive-heart/;
loss of smell,https://connect.mayoclinic.org/discussion/lose-of-smell/.

I'd love to hear from you again. Will you post again and let me know how you are doing?

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Teresa, Volunteer Mentor | @hopeful33250 | Dec 14, 2020

Hello @sherrieshe,

It has been a while since you last posted about the possible diagnosis of Parkinson's. How are you doing with that? Have you been able to get a second opinion or start any medication to help with your symptoms?

I see that you asked me if I had Parkinson's. The answer is "yes." My symptoms are not as severe as some, but some of the stiffness and gait problems can be difficult to deal with.

I would enjoy hearing from you again. Will you post an update when it is convenient for you?

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