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Janice Higgins

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  1. Hi - I am a 47 year old female living with YOPD for 12 years. I moved from MA to VA 15 months ago. I was diagnosed with YOPD at age 34 in 2004. It was a pretty simple diagnosis process. I presented with tremor in my right hand and general stiffness on my right side, gait issues as well as some other symptoms. My MDS did her due diligence and I went through the process to rule out anything else. I also had two second opinions from two other MDS at different hospitals. All came to the same conclusion - YOPD. I have been treated as such since then. I have been very blessed in that my progression is slow and I respond extremely well to carbidopa/levodopa with out side effects. Since moving to VA - I have been in search of a new MDS. I have seen two of them to date. I live just outside D.C. and have gone to reputable clinicians. One place is even an NPF Center for Excellence. Both docs question my diagnosis. When I asked why, they both seemed to think that because I was progressing so slowly that it indicated it is not PD. Both claimed that YOPD patients progress faster - which is the exact opposite of what I had been told in prior years (and what I have since confirmed to be true - YOPD is slower progressing). They wanted me to go for a DatScan. So, I agreed and went. It came back showing that I had PD. They still both question the validity of the test. One MDS wants me to lower the amount of meds I am taking to "see what happens". I am very well controlled when I take my meds. It took a long time to find the right dose that worked for me. Why in the heck would I want to mess with my dosage just to satisfy their curiosity? Has anyone else had this issue? I am just so frustrated.