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...
A little less than 2 weeks ago you were all kind enough to read & respond to my post concerning my very crazy visit to me neuro that left me confused as to whether I was dealing with PD - or some other dx or combo of dx.
After my e-mail to the doc, she asked me to come in to see her during one of her very rare Friday appts. I jumped on the opportunity to clear the air, get a complete and accurate dx, and give her one last chance to find out why my last visit was so confusing.
I did a TON of research online, printed up an accurate list of my current symptoms, and had a folder containing a time line, currents meds, and a HUGE list of questions. In my mind, she had better shine (much like I have felt all past visits went). I was totally prepared to ask for a referral to the large medical university approx. 100 miles away. In my mind - this visit would be the "make it or break it" visit. I was totally prepared to leave her practice!
Wow! What a pleasant office visit this was - she entered the room immediately apologizing for her poor explanations at my last visit. She felt the medical term/conditions she was using during her analogy of just where my PD currently stood overwhelmingly confused our visit and left me very upset. She took the time go into a over the stages of PD and just where the symptoms I experience place me at this time.
After I told her my patient portal no longer showed a diagnosis of PD, but said "muscle spasms" she told me that was an added symptom (the twisting of my left foot, tightening of the left calf & right thigh that can last for days). She logged on with me sitting there, had me scoot up closer to view what the screen showed when she opened it. She had no idea that patients weren't given this same view. I was able to read her notes along with her and see that what she was now explaining was actually what she had written at our last visit.
I went in thinking this would be my last visit, but when she dealt with other PD patients she would be a better doctor in dealing with their many issues. I left confident in her abilities and felt like we clearly had gotten to know each other better. She spent TWO HOURS with me and did not leave until every question I had was answered & understood by me.
Yes - the diagnosis is still PD. Yes - my symptoms are changing & increasing. I am better educated (though I have learned soooo much from this group & the internet, I needed to deal with MY PD!). And, I feel like we have a plan for this stage in the game.
(Next: Get out walking!!!!)
After my e-mail to the doc, she asked me to come in to see her during one of her very rare Friday appts. I jumped on the opportunity to clear the air, get a complete and accurate dx, and give her one last chance to find out why my last visit was so confusing.
I did a TON of research online, printed up an accurate list of my current symptoms, and had a folder containing a time line, currents meds, and a HUGE list of questions. In my mind, she had better shine (much like I have felt all past visits went). I was totally prepared to ask for a referral to the large medical university approx. 100 miles away. In my mind - this visit would be the "make it or break it" visit. I was totally prepared to leave her practice!
Wow! What a pleasant office visit this was - she entered the room immediately apologizing for her poor explanations at my last visit. She felt the medical term/conditions she was using during her analogy of just where my PD currently stood overwhelmingly confused our visit and left me very upset. She took the time go into a over the stages of PD and just where the symptoms I experience place me at this time.
After I told her my patient portal no longer showed a diagnosis of PD, but said "muscle spasms" she told me that was an added symptom (the twisting of my left foot, tightening of the left calf & right thigh that can last for days). She logged on with me sitting there, had me scoot up closer to view what the screen showed when she opened it. She had no idea that patients weren't given this same view. I was able to read her notes along with her and see that what she was now explaining was actually what she had written at our last visit.
I went in thinking this would be my last visit, but when she dealt with other PD patients she would be a better doctor in dealing with their many issues. I left confident in her abilities and felt like we clearly had gotten to know each other better. She spent TWO HOURS with me and did not leave until every question I had was answered & understood by me.
Yes - the diagnosis is still PD. Yes - my symptoms are changing & increasing. I am better educated (though I have learned soooo much from this group & the internet, I needed to deal with MY PD!). And, I feel like we have a plan for this stage in the game.
(Next: Get out walking!!!!)
Beekeeper
Yup - walking is excellant treatment for PD!!!
Hugs!!!
You deserve a doctor who cares everyday not just when they feel like it. I still think she was last in her class because she had no class at all. I have seen many messes with drs and have talked to so many people that have had mistakes, you name it.
Just keep on doing reseach and reading as much as you can about it. PD is a strange disease for sure....there are not too many drs that really umderstand it. IMO.
Best wishes and stay informed, hope you do well ! (hugs)
Bari
Well done you for drawing attention to points needing clarification and following it through with your notes and research. Your Dr (although she has had an off day - who hasn't these days) sounds terrific too - an apology, an explanation and a two hour consultation to clarify all of your queries I can't see what else she could possibly do regain your trust.
It's such a shame the results were not better, but with open communication with your Dr now you will at least be in a position to make informed descisions and take some control back.
Best of luck
Julie