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Janice Higgins

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  1. Hi - I am 48 and was diagnosed at 35. I have been treated for PD for 13 years. 18 months ago I moved from MA to VA. I have seen two neurologists here and both have questioned if I actually have PD. Yesterday I had an appt at Georgetown University Neurology and she basically said that I do not have PD...it's not possible. She said I have something called Functional Neurological Disorder. She wants me to stop taking my sinemet to see what happens. (ah...no. not doing that) They are basing their opinion on the fact that my symptoms have not dramatically progressed in 13 years. My symptoms are very well managed with medication. I respond extremely well. I am fortunate. I haven't had to have that much of an increase in my dosage over the years - although it has increased. The doctors don't seem to want to take into account my entire medical history. I had an amazing Neuro Dr in MA who was very good an managing my medications to suit my symptom control needs. Then three years ago, I had bariatric surgery and lost 100+ pounds. This had a huge impact on my PD symptoms. I could move so much better with the weight loss. Prior to my surgery, I was having a great deal of difficulty walking and needed the use of a cane. So, because the doctors here never saw me pre-surgery, and they see a person with 13 years diagnosed and they arbitrarily decide nope... not PD. I have done numerous trials over the years. I respond to meds (Sinemet especially). When I miss a dose it is obvious. I have dystonia, resting tremor (which was my first symptom). I am so frustrated!! Has anyone every had something like this happen to them? I am actually moving back to MA in a few months. Unfortunately, my old doctor has retired but I am hopeful that I can find another in the practice that will understand my case better. Please someone tell me I am not nuts for wanting to tell these doctors to take a hike. I don't want to think that I know more than an extremely well educated doctor but for goodness sake.... I have to say that both the doctors I have seen are young and my dr in MA was older. I don't know if that is what makes the difference. I don't want a new diagnosis. Just treat me for what I have been treated for successfully for years.
  2. 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.