DIAGNOSIS POLLS Q3: Which of the followin... - Cure Parkinson's
DIAGNOSIS POLLS Q3: Which of the following non-motor symptoms were discussed when you were diagnosed (tick all that apply)?
Please select all that apply:
I went through 5 neurologists over seven years before I finally saw a movement disorder specialist / Parkinson's specialist. I wish I had know to see the specialist sooner.
I went through 3 Neurologist before someone could tell me what was wrong with me! It should have been obvious to them before I was unable to walk and had tremors bilaterally, in my teeth, etc.!
Even when I was finally diagnosed, the doctor just said take this medication (Azilect) and come back to see me next week. He did have me talk with another PD patient in his office at the time who was on Azilect and he told me how much better it had made his tremors.
I had hallucinations before diagnosis, he just told me it was the affect on the optic nerve, and horrible nausea and vomiting which he said was the affect on the inner ear. That was the education I received...
I received no information at the time of my diagnosis and for the first 3 years each visit to the neuro consisted of the following questions: ' How are your bowels and are you passing water ok' i didn't even know why I was being asked and had to look for the information myself. I was never told about the possibility of OCD behaviors so when I started shopping excessively I never put it down to my PD. I had been spending money madly for 3 years before my husband mentioned it to the neuro during a routine visit, he still didn't explain but whipped me of the Ropinerole. I only put the pieces together about two years later when it was made public that the meds could be the cause of OCD, by then we were bankrupt and financially bereft and struggling to keep the house. We are still financially struggling now and the strain on our relationship is immense.
I feel totally let down by my neuro and I feel that he purposely kept me in the dark about the side effects of meds. I've changed doctors now cos I felt I couldn't trust him any more. people in my position should be able to sue but we are just told...too late now...but we we never told what was happening to us, it's all very wrong and amoral!!!
The discussion of symptoms were all led by me in the first three months. I had been dealing with urinary incontinence for a couple of years and taking Oxybutinin for it, even though it was not very effective. I was concerned about the sleep problems I had been having. He was more interested in getting an EEG to see if I had any brain damage from previous brain surgery.
Diagnosed by GP. No Neuro followup referral until i asked another GP in the practice.
The medical community as a whole is sadly uninformed about 75% of what Parkinson's Disease truly is, let alone the accompanying symptoms associated with medications currently on the market to treat it. I have chosen to be proactive, and have become a fierce warrior for Parkinsons awareness. There is still much that needs to be done in this venue.
These symptoms were not addressed by my Neurologist, but my GP!
