Glambert,
Welcpme to the Healing Well site. I have made some great supportive cyber friendships and there is a wealth of information that eveyone is willing to share. Sorry to here about your journey into the world of neurodegenerative diseases. You last line is the key - "you are not alone" in this!
Since this posting, I have been reevaluated by one of the top Movement Disorder Specialists in the country. I was frustrated with the progression of my "so called Parkinson's and it's atypical presentation. Unfortunately, 2 visits and several tests later, my diagnosis has been changed to MSA (c) {Multiple System Atrophy (cerebellar) with additional parkinsonian features}. It turn's out that one in ten PD'ers potentially have a form of MSA. Because a diagnosis is diffcult, patients must wait until specific symptoms develop in order to to make a differental diagnosis. For me, about 9 months after my original "PD" diagnosis, I realized my disease was following a non-traditional path. Tremors were no longer the mainstay. Rigidity, bradykinesia, dyskinesia, freezing, numbness and tingling in my extremities, muscle spasms, loss of responsiveness to L-dopa (sinemet) became the predominate clinical features. Also at the 9 month mark, I started showing autonomic symptoms (slight incontinence, temperature flucuations, light headedness...etc) as well as some visiual abnormalities which included nystagmus and glaze problems. Although the new diagnosis is no picnic, I am relieved to know what I have. Right now I am 18 months into having this disease. Parkinson's, as difficult at it is, is a walk in the park compared to this.
I pray that what you have is just a odd presentative of Parkinson's. Everyone's PD presents differently and progresses at a unique rate. Do not jump to conclusions or fear the worst. However, if you feel that your presentation is extremely atyipical, I urge you to find a top notch MDS (even if it means traveling) and get a reevaluation. MSA is usually diagnosed as PD first....until ore specific clinical signs arise.
I wish you peace in your neurodegenerative journey - and I am also here for your support. Do not be afraid, knowledge is power. Please feel free to contact me if I can provide you with any additional information.