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@foundryrat743

I had Parkinson’s symptoms, for about 5 years before I was diagnosed. We lived in a small town, in those early years, and there were no neurological specialists, that practiced there! My family doctor never mentioned Parkinson’s Disease, as a cause, for my myriad symptoms. My symptoms started approx. 12 years ago, with altered taste sensation. Then I started having constipation and resting tremors with my right hand ( like pill rolling movement ). I’d already had essential tremor in my hands, so I don’t think my Family Doctor paid much attention to the resting tremor. After a couple years, I was getting stiffness in my legs, and predominantly left leg and arm. After about a year, of the stiffness getting worse, and my gait becoming slower, my wife noticed I sometimes dragged one leg. Then rigidity started setting in, where I had cogwheel rigidity in my arms and legs, where I was having jerky movement, when extending arms and legs! My balance seemed to be getting a little worse, in the 3rd year, of symptoms. Then, in the 4th year, things got much worse. I got numbness and peripheral neuropathy in my hands and lower legs and feet, and I started falling! My first couple falls, felt weird, because I hesitated, while walking, and when leaning forward, I lost my balance, and started falling, but managed to break my fall, and not get hurt. The sensation of hesitating got worse, and, in the 5th year, of symptoms, I actually froze, for about a minute, when I was out walking, two dogs. I had their leashes wrapped around my wrist, so that they couldn’t run loose. Thank goodness for that, because at the conclusion of that freezing moment, with the dogs pulling a bit, wanting to get going, I actually was so ‘frozen in place, and stiff’ that I fell forward, and couldn’t move anything, to break my fall, and I ended up face planting on the road concrete! It was a horrible feeling for me, because I felt paralyzed! Unfortunately, I blacked out, with a concussion. The dogs couldn’t run away, and I was unconscious for just a brief amount of time! I reckon no cars came by, or no one saw what happened to me. My house was just about 500 feet away, so, I struggled to get up. If I could just make it to the house. My face was bleeding! I had a huge swelling on my forehead, when I landed on the pavement! I had a splitting headache, My face was scraped up. Luckily, I don’t think I had any broken bones! The dogs are small pets, and they behaved fairly well, considering what had just happened. I sorta dragged myself home, and my wife took one look at me, could tell I was hurt badly, so she got me in the car, and drove me to the local hospital ER. The hospital was only about 6 blocks away. Once I was admitted to the ER, they took a cat scan, and I had a heart ultrasound. Also, they gave me an EEG, and an EKG. The ER Doc said that was the biggest hematoma, he’d ever seen on a patient’s forehead. So, I was diagnosed with blunt force trauma, and a concussion! After being sent home, several hours later, both of my eyes were turning black and blue, and muscles in my legs and hands, were super sore! About 8:30pm, my son-in-law stopped over. He did not know that I had fallen and had a concussion! He took one look at me, totally surprised, and said “What happened to you?” My son-in-law just happens to be an MD! He was doing rounds, on the hospital floors, at the same time, as I was in the ER, but I didn’t know he was there, and he didn’t know I was there! So, I explained what happened, and how I fell, walking the dogs, and ending up with a concussion! So, in spite of all these symptoms becoming apparent over several years, culminating in this serious injury/fall, still there was no reason given to me, by my Family Doctor, or even speculation voiced by my son-in-law, as to what was causing my symptoms. After this last fall, my daughter stated that she had enough, and wanted my wife and I to move to the big city, about 120 miles away, where there is a regional hospital. They have many specialists at the regional hospital. Shortly after I had that fall, where I had the concussion, my son-in-law was offered a job, as an MD Hospitalist at the big city Regional Hospital! My son-in-law accepted the position, and they moved to the big city, within a couple months. My wife and I moved to the same city, after we sold our hone, a few months later. As soon as we moved up there, my daughter lined me up to see a reputable Internist MD, and when I saw him, and he got my history, and examined me, when he saw the resting tremor, my stiff walking, and, especially, the cogwheel rigidity, the Internist told me, that he suspected that I have Parkinson’s Disease. That certainly was a shock to me, because I had not known of anybody who had PD! All I knew, was that it was a dreaded, serious, Neurodegenerative disease! i tried not to show any emotion to the Doctor, when he said those words Parkinson’s Disease’. Then, the Internist said that he was going to call one of the best Neurologist’s in the city, right away, and that I was to just stay in the exam room, and he would be right back. So, when he came back, about 15 minutes later, the Internist told me that the neurologist that he wanted me to see, was out of town, for several weeks, so, because he felt that I needed to be seen, soon, he set up an appointment with another neurologist, a veteran Doctor, fot the next day! When I saw the neurologist, the next day, he confirmed the diagnosis, by stating that he would agree with what the Internist said; however, he would put me on a regimen of Sinemet, and if my symptoms improved, significantly, then that would prove the diagnosis of Parkinson’s Disease. So, Sinemet has helped me and, as my PD has progressed, to include non-motor symptoms, I am now taking 3 tablets of Sinemet, 3 times a day. The double vision symptoms, along with the ptosis (drooping eyelid), occurred for the first time, about 2 years ago. Ocular Myasthenia Gravis is still a possible diagnosis, and I have an appointment with an ophthalmologist set up, soon, so we will see how that goes. Thank you for your supportive input! Wishing you the best!

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Replies to "I had Parkinson’s symptoms, for about 5 years before I was diagnosed. We lived in a..."

Hello @foundryrat743

Your post speaks to the need to persist when you have a myriad of neurological symptoms that evade a diagnosis. I admire your persistence. It is especially good that you were willing to move to an area that had more sophisticated medical centers with more specialists. Not everyone is able to make that kind of a move.

I'm glad that Sinemet has helped you. Once you find a new specialist in your area perhaps you can ask for a referral for physical therapy for PD patients. Have you had any physical therapy yet that is specific for PD?

I look forward to hearing from you as you continue to look for answers from an ophthalmologist as well as your neurologist. Will you post again?

Wow, you had to go through a lot to get diagnosed! For a few years now, my local (and excellent) neurologist has thought I had MG, but he insisted I go to Mayo Clinic to be tested. I finally was able to go about 3 weeks ago now, and was totally surprised that I have PD. The blood tests, and several other tests, especially the EMG ruled out MG. When I got home, my neurologist was surprised at the PD diagnosis, but the Mayo doctor saw symptoms I didn't know I have, which were a slight movement in my head, pill-rolling, and not swinging my left arm when I walk. What he didn't see was my difficult walking, but as I walked more that day, my legs got stiff and i could barely walk, so my husband put me in a wheelchair so we could get around.
I ask about having both because I am not sure my neurologist is convinved it is PD, but he prescribed Sinemet and I am taking it slowly, adding 1/2 a pill to 3x/day and working up to 1 pill 3x a day. I saw my ophthamologist this week, and he prescribed an update on my prisms in my glasses and will se me again in a few months to see how that goes. He has done corrective surgery on my eyes nefore but it didn't last, which he tould me that if I have MG, it won't last.
I am glad that you have been proactive in seeking help, as I continue to do the same thing.!

Wow where I am from ,it seems like the drs. here where i am from are pd crazy ! By that I mean that is all they they want to diagnose me with is Parkinson's . I am on my 4th neurologist. But this last one told me my gate when I walk is not like a person having Parkinson's. I am going to be happier with this Dr. He at least recognizes the fact that I have had 2 back surgeries and i have arthritis all over my body Please excuse my terrible typing ! I have one arm not working well because I had a total reverse shoulder replacement 16 days ago and
I am doing very well ! Good luck to you all! oh and by the way I had both of my shoulders done at Mayo in Rochester and am I one happy woman !