New neurologist doesn't think I have PD after 16 yrs of treatment by other Drs.
My fear it is going to begin again…I’ve had at least six Neurologist over the years and a couple have cut my meds. I would then start freezing and/or falling until they increased my meds again. My wife is worried I will start freezing/falling because I can not stand up from the kneeled position without help or something to grab onto anymore. I was in the hospital a couple years ago for 2 days and the nurse refused to give me my Carbidopa/Levodopa when I asked for it. The RX had different times so it took me almost 2 weeks to get back to normal. He didn’t look at my past records till he got in the office and made a comment it was a book. I just don’t get a good vibe from him but we’ll see. Below is his assessment. Sorry for the rambling on.
"Unusual presentation. Currently there really are no findings on his examination to support diagnosis of Parkinson’s disease. However he is taking medication that could diminish the physical findings, although it is unlikely that he would completely eliminate such findings. Most patients that have had Parkinson’s disease for 16 years would probably have some exam findings, even on medication. With his unusual psychological symptoms, one wonders if he could have instead a multiple system atrophy with some mild extraparametal features and some frontal lobe type cognitive dysfunction. For now, we will leave him on his current medication regimen and will see him in 6 months time. Neurologic examination today is fairly unremarkable except for some mild cognitive impairment. Perhaps neuropsychological testing in the future may shed some light in his cognitive issues.
2. Mild cognitive impairment
Alert and oriented to person and location. He gives the correct day of the week. He states over that is September 2019 instead of October. He knows these on the second floor. Current events are normal.
On short-term recall he recalls 0 out of 3 objects after 5 minutes. This does not improve with clues. This improved to 2 out of 3 with choices.
Does not meet current criteria for diagnosis of dementia at this time. We will continue to monitor his cognitive function."
No apologies necessary,
! This definitely sounds like a tough scenario. I can imagine that it is frustrating to not have clear answers and treatment options. I can also imagine the challenge of having to start over with new neurologists. I hope you can keep us updated with your future appointments. If at any time you feel like you'd like to seek another opinion, we have this article that contains two different online movement disorder specialist tools: https://parkinsonsdisease.net/answers/find-a-movement-disorder-specialist/. I hope this helps. Take care. - Chris, ParkinsonsDisease.net Team Thank you so much Chris. The VA doesn't give us to many choices who we can use. I will keep everyone updated.
Sugarbear67, just remember that in the end, it's your treatment and your choices. Is he the only neurologist at your VA? Is there a different VA you can use? If you don't feel comfortable with his manner, you are a customer being served, so there should be a person to address about this. If you feel it, someone else might, too.
Being told that we have a hitch in our work presentation (as your doc does in how you felt he was inappropriate in his presentation to you) can allow us to improve our game and be more professional.
Whatever happens, I wish you only the best. Take care.
I have appointment with the Neurologist at the VA in Indianapolis in February. This will be my first time back at the VA Hospital since 2006, as I have been away for ... I have been away.
I Hope this doctor is not going to treat me like this. I know what happens when you don't get the meds. This happen to me and it took me 4 days to get back to where I could think and walk and talk any where normal again.I'm sorry to hear that. I hope this time is better. Let us know how it went, please.
Oh wow! Did you ask him why he thinks this and what he thinks it is? I was diagnosed with MS in 2004. New neurologist did not think it was MS. I was diagnosed with Parkinson’s last year. I still believe I have MS. Every time I go for an MRI and they ask my symptoms. The person doing it says, “Oh...you have MS?” Never has one said a word about Parkinson’s.
I had the same problem,,.. i am now on my 4th specialist and he suits me much better.. they have all tried the PD medicines on me, but none of them have ever worked and they now tell me I have a mixture of both PSP & PD and there is no medication that will work so I am waiting for a miracle.. it is very frustrating but I have come to the stage where I think that I have it as good as it can be so I just live with it. thank you bob g..
