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    • #19017
      Mary Beth Skylis
      Moderator

      Parkinsons can be really difficult to diagnose because its symptoms can be misinterpreted. And sometimes PD symptoms look similar to symptoms from other diseases. When did you first start to suspect that you had Parkinsons? Did you know before your Doctor knew?

    • #19366
      Jo S.
      Participant

      I had no idea that I had Parkinson’s. I had numerous prodromal symptoms, and I sensed that, despite their diversity, they were somehow related. It wasn’t until my primary care physician noticed that my usual essential tremor was also now a resting tremor that she mentioned the possibility of PD and getting screened. I didn’t even know what PD was, other than the motor symptoms I had observed with Michael J. Fox and Mohammed Ali, which didn’t fit me. However, once my doc mentioned it and I did some research, I had that “aha” moment and realized she was probably on to something. Of course, I wish she had been wrong, but once I had received the diagnosis from a MDS, all the symptoms I had been experiencing for years made sense and I was able to see how they all tied together.

    • #19368
      IngridG
      Participant

      I have probably had it for years without knowing it. I only became concerned about a year ago, after I fell 3 times in 3 months, without tripping over anything, but falling backwards and injuring my spine. This spring I fell again and the problem is that I cannot get up easily. I always blamed my stiffness, fatigue, insomnia, internal tremors, etc. on Epstein-Barr , mercury and other culprits. Knowing what mercury poisoning does to the brain and the way that viruses invade one’s nervous system, I suspected PD.

    • #19372
      Roy
      Participant

      My husband, Roy, saw a general surgeon at the VA in 2014 for a cyst removal. He was he first person to ask Roy if he had PD. His PCP recommended he see a neurologist, but before an appointment could be scheduled, he was diagnosed with cancer. That became primary, so he didn’t see the neurologist until late in 2015.  However, like Ingrid, we had done some research and his kids and I were sure he had PD. We saw that he had so many symptoms that we just thought were weird little things about him. We now know they are PD and he has had symptoms since his late 50’s. Therefore, the diagnosis was expected.

    • #19374
      Cemal
      Participant

      Several several years I felt right whole leg pain. ~10 years. Many times doc visits, MRIs and EMG tests

      I cannot bring any explanation or diagnose from doctors  it was different type of pain whole leg

      and after 10 years I feel stiffness on my right hand, And as your guess visit neurologist finally diagnosed PD

    • #19400
      Don Weber
      Participant

      I began to think I had PD when my Pain Doctor ask me every visit if any Doctor said I had PD. The answer was always NO, through part 2018 and all of 2019. The Advanced Practice Nurse, who had been my neurologist for about 5 years,told me that I would meet the new Doctor at my July 2018 Visit. During the July visit I ask her directly if I had PD, and the answer was she could not make a diagnoses as I was taking PD medicines. I had a visit with my Primary Doctor in November of 2019 and I ask him if I had PD. He brought up records of my visit of July 2018 with the new neurologist,her diagnoses PD. He then got me a visit with a neurologist in his group for December  2019,her diagnoses was also PD. I could finally answer the Pain Doctor’s question with YES I have PD. I have a Pain Doctor because I have a Spinal Stimulator, that he implanted,because of failed back surgery.

    • #19403
      Brennan
      Participant

      I never suspected Parkinsons, never crossed my mind.  I’m 44 years old and the only issues I was having were difficulty writing and my foot/toes kind of cramping or toes curling sometimes.  At a routine doctors checkup I asked him to look at my wrist thinking it was carpal tunnel or something. He said he was going to refer me to a neurologist. “A neurologist?” I said, thinking it was my wrist or hand, why do I need to go to a neurologist. Well, after the neurologist had me do some test, he said he suspected it was PD. I was shocked to say the least. I then had an MRI to rule out other possibilities, and took a DAT test that confirmed PD. Not a good day, that was 8 months ago, so still pretty new to all this. Now, after reading other PD patients stories, I do feel fortunate for being diagnosed so quickly.(trying to find the positives these days) I can only imagine the frustration of having the symptoms and going to a bunch of doctors appointments and no one being able to tell you what is wrong. Looking back, I was having symptoms maybe three years earlier. I remember a couple summers ago, when wearing flip flops, the flip flop on my right foot stopped snapping back up when I walked, it would kind of just slide. I thought something was wrong with the flip flops so I got a new pair and the same thing happened. So that, along with unusual joint stiffness, muscle tightness and fatigue that I just assumed came along with turning 40. A little worried about the future and what’s to come as I know I’m in the early or “easier” stages.

      On a different note, I haven’t told my kids, 10, 5 & 3 yet. Was thinking about telling my 10 year old but I don’t want her to worry. Any advice or experience with this? I find hearing from others with PD helps me more then talking with a doctor about someone who hasn’t experienced this. I don’t mean this negatively but it seems the only people that “get it” are people with PD or there caregiver. Feeling pretty alone these days so thank you for the comments and providing a forum for me to share my experience.

    • #19404
      Jeffery Hill
      Participant

      At the age of 56 I developed weakness in my forearms and a flutter of a resting tremor in my left thumb.  My father had developed symptoms at the age of 57 so I began to research the list of all PD symptoms.  I realized that my 5 year loss of smell, deteriorating handwriting and “frozen” face also fit the bill.  I asked my GP for a referral to a neurologist which took a year to come through.  At my first appointment I was diagnosed with PD.

    • #19421
      Todd Kitten
      Participant

      I had been taking medication to control essential tremor for years when at the age of 52, I began to notice that the tremor in my right side was getting worse and had a different amplitude. Then one day I noticed my right arm wasn’t swinging when I walked. I did a Google search on something like “one arm doesn’t swing when I walk” and both signs showed up on a list for Parkinson’s. My father had had it too, so it didn’t seem that far fetched.
      I told my family physician what I suspected at my next checkup. He asked me to hold my arms out straight and when he didn’t see much shaking, told me he didn’t think I had it. However, he also gave me a referral to a neurologist who specializes in movement disorders and after a much more thorough exam, he diagnosed me. That was 3 years ago.

    • #19564
      Anthony
      Participant

      Hi everyone,
      There was no suspicion, only after a comprehensive examination my neurologist said that it was Parkinson’s disease, or rather a condition from the category of Parkinson’s disease. Before that, I had strange falls when I seemed to completely lose control of myself, which made me doubt my health.

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