DIAGNOSIS POLLS Q8: When you were first d... - Cure Parkinson's
DIAGNOSIS POLLS Q8: When you were first diagnosed, what was the QUALITY of the information you were given? (Q1 asked about quantity) - tick all that apply
JonStamford192 VotersHe was simply told to take his meds and stay active. There was no discussion of progression, new symptoms, no written literature, no referral to a support group. Everything was minimized.
This sounds alot like what happened to me. Personally, I reachon the Doctors are on the take from Big Pharmas, and their only function is to get u to take more chemicals that are basically poisons! But they never tell you anything negative in the beginning, like the drugs are addictive and their effects wear off after a certain time....in Australia we cannot get a DAT Test done since we do not produce the isotope needed to do so. Had I known in the beginning what I know now, I would never have started taking the meds. Go to Germany even if u have to sell your house to do so, their research and treatments are Lightyears ahead of USA & Australia!
We received much better care after we switched to a Movement Disorder Specialist. He was very upfront with what was going on and did not order a lot of meds. He was only on sinemet, selegiline and zoloft for his depression.
I had the same experience. I live in South Africa, but that is no excuse for not explaining the condition to me, properly. I was prescribed one type of medication, an MAO-b inhibitor, which fortunately turned out to be the best thing that he could have done for me.
I only learned something about PD after I joined a support group.
Our neurologists appear to be too busy making money, to be able to spend time with patients.
John
You'll be fine.
I saw one neurologist in brussels who told me it wasnt pd just mechanical. 3 years later after clear brain scan i saw 3 neurologists in mintpellier and paris who all just told me to take pills and return ib3 months. Isaw 3 in england.
What they all had in common was a complete lack of sensitivity, no bedside manner and all english ones wrote reports with major inaccuracies.
I dont see any now...
We had fully expected the dx, and had spent a great deal of time reading about PD, it was more relief than anything, but he gave us more info on meds and such.
On my 3rd visit he switched me from sinimet, which he used to diagnose, to requip without telling me to titrate off one and on to the other. Thank goodness I found my present neuro who is a prince!
Four years after diagnosis I am still not sure what symptoms are due tp PD and which relate to other conditions.
Just given pills and told to come back in 6-12 months.
This led to me suffering OCD effects of Ropinirole - leaving me with debts I will never be able to pay off!
I find Neurologist uncomunacative and GP out of depth.
PD Nurse refused to see me after I stopped the Ropinirole said "no point me seeing you if you are not taking your meds"
I useed to blindly beleive everything the medicsal profession told me - now I feel I have to question everything very closely indeed!
I should have added (above) the Parkinsons Society Information and Support Worker has been wonderful - helped me with all sorts of things.
I was told "you have parkinson's. You should be good for five years. ". Then he gave
me 3 prescriptions which told me I might not be.
Hi that is similar to us but there is a possibility that my hubby could get 10 yrs with the meds. 10 mins appointment two scripts and no leaflet or info then come back in Feb and we have still not got a letter with an appointment for this month. I feel like we are treading treacle at the moment.
MY GP read it (Diagnosis) from a computer screen I got no information
niether goodbye nor kiss my ass.
since my diagnioses i found a charity callled neurosupport who i fundraise for
based in liverpool and work with the walton centre
I've gotten more information from HealthUnlocked, Mchael J. Fox Foundation, and the National Parkinson's Foundation than I have from my neuro doctor.
I was not given much information when I was first diagnosed. I think maybe 1 pamplet. I did all the research myself.
After hearing Parkinson's Disease I started to fade away and was not hearing anything she was telling me anyway. the next visit was more informative because I came armed with questions!
Jupiterjane
after i had an MRI on my head, i was diagnosed with parkinsons disease. it had a nice name. i didn't know anything about it, i still don't know much. just making life a little more confusing. i have looked it up on google, and got some information. and michael j. fox's book helped a lot. felt i was in in good company. i did my research myself 'cause i didn't know what questions to even ask. it has been quite a few years since i was diagnosed, and told i have a light case of it. [so far] he didn't say that though. so far i guess i have been lucky. just so they don't give me the wrong medication. again.
Inadequate!
We were not given any information at all.
The doctor was telling my wife that he was putting her on medication for Parkinsons and
when I tried to ask him if She had Parkinsons he said yes as he left the room. We have not been able to find another doctor who treated Parkinson's patients in this area.
Unfortunately...no information was given. The Consultant just confirmed my husband's thoughts that he did have Parkinson's. We did all the research ourselves.
I cannot comment on the quality of information because it was non-existent!
I did not receive any information at all.
Can't really remember as it was so long ago...151/2 years..but think it was fairly basic info by way of a leaflet with the Dr trying to be reassuring...
on our first visit to a neurologist my husband didn't even get to sit down - just walked across the floor which took all of about 2 minutes. The second and last visit was no better and we were disgusted. I have got more knowledge about parkinsons from google. No compassion at all from the medics and feel they are just after ones money. Joan
i guess i'm far from being alone. as far as being given any information about it.
neuroloigist's are a strange group. they don't say any more then they have to. thank you Michael J. Fox for all the help you have been to so many. at last we can get information. maybe they don't know much about parkinson's either.
Info was vague and inadequate. Did my own research and reading.
was given no leaflets they had none at hospital the consultant spoke to me was very upset he was kind at first then very blunt about what i cud expect didnt like that at first but i know now he has to be honest cant sugar coat it he is very good at his job can ask anything cant always see him gets busy he kindly tested my sister she didnt have it so glad but doesent seem it hereditary
My husband was diagnosed 11 years ago. We were sent to a specialist - supposedly the "guy" who wrote the book on PD. As we've learned over the years, there was an entire department just for dealing with PD patients, from drs. to social workers to pt/ot/speech and swallowing and not one person ever contacted us. We did the contacting - and still nothing from the dr. I'd love to find a different one, but my husband likes the doc. I really thought it was just us - I'm sorry to hear so many have the same story.
When mywife was diagnosed with PD the doctortold us she had it and walked out of the room sayng precriptions would be ready at the front desk.
The doctor didn't give us a diagnosis, we were the first into her office, spent all day having tests, she said to me " who takes care of the finances? " When I said my husband does,( he was the one being tested and treated) she said you should change that. Then wrote scripts and we left. At the desk we made a follow up apt and asked, do we know what is going on? The receptionest said you havePD. We never went back to that doctor. We made a apt with a different doctor, waited 3 months to get in and get a second oppion. The first doctor I researched on the internet and she had all these great reviews, not for us. The second Dr. was the only one we could get an apt with at UPMC in Pittsburg. She is great and worth the waite and drive to see her. She gave us her e-mail address and we can "talk" any time we have a question about any part of PD. She gave us info on support groups, PT and side effects of the drug she perscribed for my husband. We had tried for years and all types of doctors before we got to a nuroligest. The reason we even went to a nuroligest was because a phyciatrist my husband was seeing suggested it when he told her he was having trouble typing, we would never have thought of PD and neither did the 10 different specialist we had goen to. It was a good to get a diagnosis, and put on the right tract.
I was MISDIAGNOSED as having peripheral neuropathy, and thus went untreated for years.
My husband was too shocked to take it in really, I was asked what I thought it was and I just said hoped it wasn't Parkinsons disease, she said you are right, but no real emotional support given to either of us, until next visit which was of course months later. that was 17yrs ago and must admit things have improved apart from not enough staff, but thats the sign of the times in NHS
I was told I had Parkinson's Disease, given a website (lets move) to check to see what it was, and told to return in three weeks. The entire appointment lasted five minutes.
I was misdiagnosed with Essential Tremor for first year by one Dr. Rediagnosed with Parkinsons by second opinion Dr. at Duke Neurology a year later which of-course, allowed me to begin meds for symptoms.
My doctor said I needed to seek mental
Health. Because of my limping and
Hunch over. I responded I am vain
And by the way every time I limp I get
Paid $1000.00 not. I made a. Deal refer me to
The best bone specialist in ca that my health
Will pay and then we can discuss mental Health
And the rest is history . You are. Your best
Advocate
Lolitalola
Medical practice or practicing medicine It all depends on the patient
You know your body better than anyone . Take control some meds
Can make PD worse . We are all practicing what meds will work.
L
And some
It took me 3 neurologist later to get a correct diagnosis. Till then nobodycould tell me why I was having this uncontrollable movement on my one side. After the diagnosis I was given Sinumet and told to go online to learn more about it. If I had any questions then I should call That was my introduction into the world of PD. I've learned more listening to folks on Health Unlock.com
I was given next to no information about how this disease might progress. I knew I had the disease through researching my own symptoms. the doctor wanted to see me cry, but I didn't cry there. I sobbed at home and then I went to work reading about the disease and made a decision a few months later that I was the principal warrior in this fight and began an exercise regimen I maintain seven years later. I also have a new doctor.
I self-diagnosed 18 months before a neurologist confirmed. My GP hadn't seen PD before, just moved my limbs around, said I was OK, even though I knew I wasn't. Neurologist went very red , said she didn't want to spoil my Easter but felt she had to tell me I had PD. No further info, no paperwork, just said she would write a letter to my GP and there would be follow-up. I was on my own and in TOTAL SHOCK!!
My neurologist was not too descriptive. He merely indicated it was a progressive disease that he could treat with medications. I suspect the disease is just too difficult to predict the timeline on and he didn't want to introduce unnecessary anxiety. He didn't know which support groups to recommend.
Got a prescription and an appointment in six months. that is IT.... I am glad at least some folks are getting more information... I think that an integrative approach - with physical therapy included especially could be much better... How can we make this more available?
No info.at all. No leaflets or posters amongst the many leaflets/poster about other conditions lying about in the waiting room A name scribbled by the neuro on the top of the appointment letter which meant nothing to me but which turned out to PD Nurse who I saw several months down the line. Tissue offerred but I was too shocked to cry.. Direct question about prognosis elicited 10-15 years. I was 69 I commented it didn't sound that good as my mum was nearly 100 when she died although I think it was meant to be encouraging. At this point he was obviously eager to capitalize on the fact I had been seen a quarter of an hour early, i.e.better things to do than chit chat with the patient . I harboured the perhaps unjust thought in the midst of my shock that perhaps the golf course called as he bounded back and forth through the waiting room. We know that there's not a lot to say but there's a much better way of saying little than what seems to be far too common abrupt announcement. .
On my third visit I asked what he had actuallly meant by 10-15 years. Answer "What did you mean when you asked what the prognosis was?" with clarification following that the 10-15 years was the period before they ran out of drug treatment options
..
Each appointment starts with a pregnant pause while I attempt not to be the first to break the silence just for the hell of it. And this my instincts tell me is a basically nice guy. What do they teach them in their training? Fours years on I am on yearly visits but I can telephone and I have twice and got put straight through and I really appreciate that.
As for an integrated approach - we seem to be light years away from, that unless you are lucky enough to live in places where multi-disciplinary clinics for neuro conditions exist - I
believe there's about 4/5 ( ?) . .
Quite a few years ago, maybe 15 I had a tremor in my left hand. My family Doctor sent me to a Neurologist. He told me it was Essential Tremor and gave me a presscription. I followed that for a couple years but it did not seem to do much so I decided to just let it go as at the time it was not bothering me too much. abbout three and a half years ago I went to see my family Doctor about it again and this time he sent me to the Movement Disorder Clinic in one of our geneeral hospitals. I saw a Neurologist that specialized in Movement Disorddeers. He did some checks and gave me some medication. He said he did not think it was Essential Treemor but Parkinon's. He told me to take it for a few days and comee back. I went back a few days later andd he confirmed it to me. Since theen I see him every 4 months and each time it is progressing and so he changes my meds. My family Doctor saw the way I was walking when I went to see him about something eelse and he suggeested that I should start to use a cane for stabbility which I use now. When I went to see my Neurologist almost a year ago I told him I wass having voice problems so he made an appt for me to see a speech pathologist and when he found I was having swallowing problems he made an appt for me to go for swallowing tests. That is in a few weeks from now. I have to say that in my case I have been well taken care of. Theere have been times that I had somee problems and my Neurologist hass talkedd to me from his home. I have been told that I can contact him or the office or nurse anytime I really have a problem.
I also do my own research on the net so I can keep up with what is happening and I also keep noteess of how my Parkinson's is going so each time I go I ccan let him know how it is going as it is diffeerent for eveerybody. It is probably the most difficult disease there is because you never know from onee minute to the neext how it is going to afect you and that makes it difficult for the doctors as well as they cannot predict in advance how you are ging to be when you go to see them.
Sorry about the spelling, anotheer thing I got frrom my friend Parkinsson.
I wasn't given any support when diagnosed. I was alone at the appointment and my neuro told me in a very matter of fact way that he thought I had PD as if he were telling me I had a cavity in my tooth. It was so insensitive. He was telling me that I most likely had a life-changing condition yet he was so flippant. The height of arrogance.
i was told i had pd - so i went home and looked it up on the internet as most sensible opeople would do - that is how i camE TO THIS SITE AND ALSO DISCOVERED THAT I HAVE psp and not Pd
poor Dr just walk in and said I hand PD and left
My symptoms began at least 6 yrs prior to the official diagnosis in 2010. At the time I had just finished a routine health check with my GP before my move to Ireland and mentioned my tremor in passing like it was a common cold symptom using words like...essential tremor and Parkinson's to see what reaction Id get. (Id actually been doing that for some time to my friends getting all the positive reinforcement I needed ..".course you haven't...don't be silly, you're fit as a fiddle! " The response I got was "well just keep an eye on things"so thats all I did for another 6 yrs despite knowing the day would come when it would need more than that. I had done my research from day one and knew deep down from the first tremor . When I eventually saw a neurologist , I had a well rehearsed written script which I had hope to hand to him . He told me to put it away and tell him what was happening in my own words. I told him it was Parkinson's and he sat back, smiled and asked why i thought that. So, I proceeded to do just that and after listening to me for about 10 minutes , he smiled again and told me I was probably right and if I'd managed so far with no meds, it sounded as if might be progressing slowly . Time would tell." It was such a relief to finally own that label and to acknowledge what I'd been in denial about for so long.
From that day, my relationship with my neurologist continues to be one in which I feel supported, my opinions and questions are welcomed (even those in which I challenge his!) and I feel confident that he has my best interests at heart. I ve had some tough times in the past 3 yrs but he has always been available to me when needed. As a public patient, his services are free to me and I know I'm very lucky.
Not really given much info
