Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
Over 2 1/2 yrs ago - after numerous medical tests (including cognitive testing) and taking a "watch & see" approach - my neuro diagnosed me as having PD. She told me we would have a lot of ground to cover, so she wanted me to come for an appt. every 3 months to discuss any new symptoms and go over various areas we needed to work on to keep my body & mind in it's best shape.
Monday I went in for an appt with her (8am on Monday....not a good time I learned!). Luckily, my husband happened to have the day off and went with me to my appt. or I would have thought I dreamed up the awful nightmare that happened.
She listened to a few of my newest symptoms (tightening in my left calf that can last 2-3 days, changes in my personality that are increasing -such as loss of patience, increased head tremors) and then got up and started pacing. She even walked out of the room, literally scratching her head and mumbling about changing my meds, but not knowing what she should do. (I looked over at my husband to see his face echoed the same shock I was feeling!)
Then, she starts throwing out all kinds of words, terms, medical conditions. I am now really thrown for a loop and start trying to figure out just what she is telling me. PD, parkinsonism, dystonia...a combo? all three? And, then she tells me we discussed this at my last visit. Now I may be losing my mind, but I'm positive I would remember THAT conversation!
She asks ME what medical test she ran on me three or more years ago (she doesn't have her computer with her-so I guess she didn't know). In my mind I am thinking - oh, that would be the THOUSANDS of dollars of testing I still have a couple thousand left to pay on!!! But, I tell her - blood work for everything under the sun, a spinal tap, cognitive testing, etc., etc. So - she orders a TON of blood work. Oh - and she changes my anti-depressant (I suppose because by now I am crying!).
I try to question her more to try to understand what she is telling me when she throws up both hands, says "I gotta go!", and leaves the room.
I am so very thankful my husband was there! I sobbed hard for more than 10 minutes in his arms before I could leave the exam room.
The next day I sent an e-mail to her. I "played nice", but did explain how I had cried for 2 days over this appt. and I asked her several of the questions I needed answers to. Kinda doubt I will hear back, unless she removes me as a patient.
I have felt shamed - like I had no right to be a part of this group just now. But, this morning I decided how much I care for all of you and feel you are a caring group willing to openly share honest input.
Bottom line: Has this happened to you? Has your diagnosis been changed by a previous doctor? Is this normal? What would you have done - or what have you done when a doctor treats you like this?
Monday I went in for an appt with her (8am on Monday....not a good time I learned!). Luckily, my husband happened to have the day off and went with me to my appt. or I would have thought I dreamed up the awful nightmare that happened.
She listened to a few of my newest symptoms (tightening in my left calf that can last 2-3 days, changes in my personality that are increasing -such as loss of patience, increased head tremors) and then got up and started pacing. She even walked out of the room, literally scratching her head and mumbling about changing my meds, but not knowing what she should do. (I looked over at my husband to see his face echoed the same shock I was feeling!)
Then, she starts throwing out all kinds of words, terms, medical conditions. I am now really thrown for a loop and start trying to figure out just what she is telling me. PD, parkinsonism, dystonia...a combo? all three? And, then she tells me we discussed this at my last visit. Now I may be losing my mind, but I'm positive I would remember THAT conversation!
She asks ME what medical test she ran on me three or more years ago (she doesn't have her computer with her-so I guess she didn't know). In my mind I am thinking - oh, that would be the THOUSANDS of dollars of testing I still have a couple thousand left to pay on!!! But, I tell her - blood work for everything under the sun, a spinal tap, cognitive testing, etc., etc. So - she orders a TON of blood work. Oh - and she changes my anti-depressant (I suppose because by now I am crying!).
I try to question her more to try to understand what she is telling me when she throws up both hands, says "I gotta go!", and leaves the room.
I am so very thankful my husband was there! I sobbed hard for more than 10 minutes in his arms before I could leave the exam room.
The next day I sent an e-mail to her. I "played nice", but did explain how I had cried for 2 days over this appt. and I asked her several of the questions I needed answers to. Kinda doubt I will hear back, unless she removes me as a patient.
I have felt shamed - like I had no right to be a part of this group just now. But, this morning I decided how much I care for all of you and feel you are a caring group willing to openly share honest input.
Bottom line: Has this happened to you? Has your diagnosis been changed by a previous doctor? Is this normal? What would you have done - or what have you done when a doctor treats you like this?
IMO --- sounds like she has already did plenty of testing and you were "observed" long enough for her to find a proper diagnosis. I have found that when they hesitate it seems they are unsure of their own medical ability which to me sends a red flag. And when they start playing games then I am out the door.
My advice to you would be for sure to find a different dr and keep looking until you find one that has their head screwed on right. This is a serious illness and you are having alot of symptoms. Stay strong, it nothing you did wrong so hold your head up and keep looking for a good dr, sometimes that takes awhile. Best wishes!
First, you may want to approach your physician and explain your concerns. Second, you may choose to report the behavior to another physician who works with your physician or who has treated you or a member of your family. Also, a number of hospitals and group practices have grievance mechanisms in place for patients to lodge complaints.
Other avenues for addressing complaints include the state medical society or licensing board. These organizations have appropriate investigative bodies at the local level that can review physicians conduct. If appropriate, the licensing board can take disciplinary action against a physicians license to practice medicine.
American Medical Association
Oregon Board of Licensed Physicians
The Board now has a complaint form you may use, or you may write us a letter telling us who the doctor or other licensee is, what happened, when it happened, and who the witnesses were (if any). You may also call the Boards Complaint Resource Officer at (971) 673-2702; or toll-free at (877) 254-6263 from anywhere in Oregon outside the Portland area. Ask to talk to our Complaint Resource Officer and intake investigator. He will explain how our system works. See the How to File a Complaint section in this web site for more information about this process.
Brer T
Brer T
Ouch. Pretty clear that it is time to move on.
Thank the doc for her help (for she DID help before, right?). Forgive her odd behavior and mistakes (so that you can move on). Your priority is your future, not your past. So get to work networking your way to your next doc. You deserve the best. Put your shoulder to it.
Our thoughts are with you.
Beekeeper
That's awful and had/has to be pretty frustrating for you. I agree pretty much on everything that's been said above. I see the general consensus is to get another opinion and i do concur. You have every reason to be upset with this doctor. We trust our docs, as we should, Terrrapins post was really good and informative and maybe that doc should be reported. As far as feeling ashamed about coming to this group????? Honey this is the best support group you're ever gonna find. And what makes a great group you say? They support you no matter what as we will .. plus we would miss you !!!! hugs, paula
something is wrong with this picture. Oh yes get a lawyer too . Maybe that will snap her to an appropriate action. Do not be ashamed to be on this site, here you get the support you need and a god advise. Beside good friends.. Do not despair stay strong. Zlatica
When my original neuro died suddenly of a heart attack, I had to search for a new doc. My reaearch led me to a neuro at U of PA. After my first evaluation, he said I did not have Parkinson's, & was convinced that I was in the beginning stage of Lewey Body Dementia (?!) He ran tests to confirm this, but they all turned up negative. Instead of throwing up his hands, he referred me to his colleague who headed up the Dept of Mvmt Disorders, where my Dx of Parkinson's was reconfirmed.
Good doctors aren't afraid of second opinions - they welcome them.
Bari
(PS - Talking about changes ... ummm ... how old is your doctor? Could she be going thru her OWN change?)
I have a friend who had been diagnosed with Parkinsons for several years and was put on sinemet. She is also biI-polar and been on meds for years for that. During a hospital stay she was taken off her bi-polar meds (what a disaster - but another long story) and her shaaking totally stopped. They decided she does not have PD after all, but instead the bi-polar meds were causing Parkinson like symptoms. They changed her meds and the synptoms were gone, So yeah - doctorss make mistakes - and guess wrong. It is a guessing game sometimes. A frustrating fact - but a fact none the less.
As far as being here - don't you dare leave us!!!! You are family - and I would miss you terribly!! I hope you find the answers you need. And I hope you are blessed with some peace of mind as you continue to try to figure this all out.
Hugs!
Of course - no response to my e-mailed remarks and questions to the doc. I'm sure they must be very careful of anything they put in writing for fear of possible lawsuits these days.
My blood tests were this morning, so think I'll keep my next appt. to get those results and hear what she has to say about a definite diagnosis - or at least where she is headed.
HOWEVER - I plan to sit on my computer and research neuros within a 200 miles radius of my home today. (That should keep me busy!) I am only 100 miles from a large teaching hospital that is involved in several PD research projects (none of which I have qualified for YET). You're right....a good doctor shouldn't be afraid of a 2nd opinion!
Right now I just want to know what is going on with my body/mind, so I can FIGHT. I am taking your advice - not going to look back or dwell on that, but move forward!
You are all amazing!!! You took the time to respond - which means more than I can express to all of you!
Whatever the outcome, wether you end up having PD or not I would like you to call by when you need help,support & reassurance.
I think a change of Neuro is a must... and he or she obviously ain't upto the mark and whoever has the authority should remove the Neuro from it's post before others get treat the same appalling way.
Yours Sincerely ~ Dirky ?;O))xx