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Hello Teresa, thank you for your response I appreciate you. I first noticed a small tremor on my finger but thought nothing of it because I work using a computer on a daily basis and thought that was the cause. One day I went with my staff to eat lunch and I was trying to eat some soup and my hand started shaking uncontrollably. This is what prompted me to see the doctor. My father had Parkinson’s and I recognized that tremor. I noticed some changes in my voice but again thought nothing of it and thought it might be related to acid reflux. My doctor referred me to a neurologist who asked me a couple of questions, had me do some things with my hands and feet and had me walk and turn. She said she didn’t like what she saw and she sent me for an DAT SPECT scan. This is when she diagnosed me with Parkinson’s. Waiting several months to get the scan and then having to wait another month to see the doctor for the results was mentally draining. I wish we didn’t have to wait so long for this process.
I started researching on the internet and reading some books I purchased which have helped me tremendously with symptoms that I am experiencing. The symptoms I am feeling hit me like a ton a bricks all at the same time. I started with the tremor, the voice issue, and then I had problems with gait. I was walking to one side and I started moving slower. I started feeling pain in my legs which turned out to be rigidity of my leg muscles and I have started feeling it in my neck and shoulders. I have started having lingering headaches and problem with my eyes. At times I feel confused and I am having some memory issues. Sometimes I have a difficult time getting words out when talking with someone.
I have a strong feeling that I may have something more than Parkinson’s. From my reading I am leaning towards LBD or PSP but I am not a doctor. But I do know my body and what I am feeling. I am hoping they can give me some answers. I am scheduled for an MRI but again I have to wait a month for the appointment. I learned that there is no one test that will definitively tell me if it is any of those but I have to keep trying. I am physically, mentally, and emotionally exhausted! I have a wonderful wife who is very strong, but I know it is also affecting her. I never want to be a burden to her so I must keep moving forward. I have noticed a decline in my health but I am not giving up.
On a good note I have lost 35 lbs and I have regulated my A1C so my doctor took me off of the metformin. Kind of bitter sweet huh. I have other symptoms and I can go on and on. I will stop there for now. I am looking for help but I have learned that with these types of diseases there is still much to be discovered and limited neurologists that specialize in this field where I live.
Thanks again and I will leave it there for another day. 😊
Replies to "Hello Teresa, thank you for your response I appreciate you. I first noticed a small tremor..."
Hello @louiem777,
As it has been a while since you last posted about your neurological symptoms, I wanted to check in with you to see how you are doing. As I recall, you were going to have an MRI. Did you have that done?
I would be interested in hearing from you again with an update. Will you post and let me know how you are doing?
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Hello @louiem777,
I can see that this journey to a diagnosis has been a long one. When my symptoms first started, I saw two to three doctors trying to find an answer. I was given possible diagnoses of early MS, early PD, and "I don't know." The last one was the hardest to accept. It took about 10 years before PD could finally be diagnosed and this mainly came about after I was prescribed Sinemet. The neurologist told me if the med helped my symptoms, then that was most likely my diagnosis.
Prior to the DAT SPECT scan, what other tests were done? I'm thinking of EMG (nerve conduction test), perhaps a lumbar puncture? As you said that there are, "limited neurologists that specialize in this field where I live." I'm guessing that you live in a rural area. If you need to see a specialist for a second opinion, I recommend seeking out an opinion at a PD Center of Excellence. There are several throughout the country. If traveling is involved, you might find it worthwhile even given travel time and the expense.
I suppose that by now, you have been given some PD meds. Have you noticed much of a difference yet? What type of exercise or physical therapy has been tried?