DIAGNOSIS POLLS Q7: Who FIRST definitivel... - Cure Parkinson's
DIAGNOSIS POLLS Q7: Who FIRST definitively diagnosed you?
The Neurologist I first saw was brutal in his delivery of the diagnosis. I got second opinion - with a Datscan
hopfully you got a second neurologist as well
Many physicians examined me over the course of 5 years. bit it took a neurologist to spot the dragging of my left leg and several other movement inadequacies/
my mom had tb when she was 20-there was no cure and she stayed in a sanitarium watching many die.she is 91 now. I get frustrated but i know if she can survive that so can we.I did not take any meds for 2 years, then i realized what legacy is that to her? I know now God does not make mistakes but thinking he does is a big one on my behalf. I have little to do but hope and wait for insurance next year.
I had been trying to get some kind of diagnosis for almost a year Couldn't hardly get up off the couch, quit driving, etc......Primary care physician, VA primary & neuro....they all thought it was all in my head. VA even sheduled me with psych.Called Mayo Clinic/Jax in April, got in in May, diagnosed in 1 1/2 days. After two weeks on Sinemet, I was almost back to normal!
Your story sounds similar to mine. I had complained of double vision, fatigue, inabiity to sleep, and "feeling like I was shaking inside" over a 5 yr. time frame to my internest. I was going through a divorce, he gave me meds for anxiety and sleep. I went to the first two neurologist on my own. I actually walked out of one office when one tried to tell me I had neuropathy, I had a recent EMG done of my whole lower body and did not have neuropathy!
For almost a year before diagnosis, I had bilateral tremors, worse on the left, when I could not stand up without falling, and then when I could walk had freezing and would fall, I called another neurologist. He got me in within the week and gave me the diagnosis.
After 2 visits to GPs over several months...both telling him to go way and "monitor" how he was......he self diagnosed. My husband then saw a different GP and told her that he thought he might have Parkinson's. She did not think so, but refered him to a top Parkinson's Neurologist . Unfortuantely...my husband was right!!
I went to a private neuro with a twitch in my elbow that was spreading to my hand and shoulder. He took a battery of tests to rule out all sorts of nasties. Then referred back to NHS chappie who, because of the progression that happened between appointments Dx PD.
A year of struggling to find a drug that worked and that I could tolerate concluded with a referral to PD specialist with a query over the Dx. (now that was scary) The PD specialist agreed it was PD and I am now on a different drug regime that works!!.
My first diagnosis was from a general neurologist at a highly rated teaching hospital. I took me two months to get this appointment. She obviously did not take the course in compassion , concern, or "give a patient hope".Her approach was less than encouraging. Gave me no additional information, nor referrals to movement disorder specialists. Told me to go back in 6 months.
Needless to say, I had to do all my own research about the disease, hope for a cure, and finding a movement dirorder specialist.
GP diagnosed me or more accurately agreed with my diagnosis. It was an extremely short assessment. Thank goodness for NHS protocols (nice guidelines) on line. After a couple of days reflection I then asked for a neuro referral.
I was misdiagnosed for 2 years with everything from bursitis in my hip (stiffness) to nerves to depression to being out of shape. I saw a reumatologist in Ohio who said I may have scleraderma or another autoimmune disease. I saw a doctor at a world renowned hospital in Cleveland who diagnosed me as having bursitis. My husband and I moved to Virginia several months later, having sold our home after 30 years. My symptoms worsened a great deal due to all the stress involved in moving, so that by the time I got to our new home in Virginia I could barely walk across the room. I had begun to suspect I had PD and my daughter took me to see her primary care doctor who agreed with me and sent me to see my current neurologist. It was almost a relief to finally know what I was dealing with.
My family doctor was 100% on the diagnose parkinson. Two young neurologist told me he was wrong, and one of them was angry that i listened to my family doctor.
After that I had 4-5 psychiatrists that told me to trust the neurologist.
More than a year after that i had an appointment with my company doctor. He also could see the signs. But he knew which neurologist that was good enough to diagnose me.
My conclusion is that experienced doctor or a neurologist who focus on parkinson are the one you should look for if you suspect parkinson.
I was very slow in movement and having recently had a goitre removed I thought they had taken too much away and my thyroid had become under active. My doctor sent me to see a thyroid specialist and it was the thyroid specialist who thought I had the early signs of parkinsons. He had to refer me back to my doctor who then had to refer me to see a neurologist. That was probably 7 years ago now. I was glad at the time to get the diagnosis as I knew something was wrong.
My GP referred me to a neurologist. She informed me
I had PD. I started asking questions. She responded that I had an incurable neurological disease. There was no cure and I would get worse until I died.That was a one time appointment.
We are on our own.
Here is what I have discovered. You need to examen:,
Yoga
CoQ10
Citicoline
Doing the things you really love if you can
avoid negative people like the plague because they are a plague.
meditation
religion
cognitive therapy , read the works of Epictitus.
See old friends find new friends.
Study brain plasticity
get a WII with wiii fit plus program
get laid if you get a chance. close your eyes and pretend your eighteen. Get your partner to go along with you.]
tell your grandchildren you have millions hidden away that they get when you die.
You will get tons of attention.
Plant an apple tree. I want a Roxbury Russet. Best apple there is. Fives years to bear. I plan to pick the first one.
When you feel sorry for yourself think of my brother Dick. He had muscular dystrophy. On my worst day in life I felt better than he did on his best day.
ask you significant other to slow down when they walk by you. You may be slow but a nice pat on the butt is good for both of you.
A speaker at a NWU symposium gave a lifting comment. Hope is nothing but delayed devastation. Screw him.
There are still sunny days, flowers, wildlife, happy children, beautiful women and men, fast moving streams, placid ponds, interesting politics great sporting events, musical events etc.
And some day some where a scientist is going to lift his head and say to his to staff" we did it".
Until then I am going to be as happy as I can because that will make my wife, kids, friends
and strangers happy. Even better, it will really piss off my enemies.
Sorry for the off color statements but off color has been a trait of mine for seventy years.
Hang in there folks. None of us are getting out of this alive so lets have a good time to the best of our ability.
Definitive diagnosis was by nurse of a movement disorder specialist.
Pain management doctor
I self diagnosed myself prior to seeing Neuro. Just a Gut call
