Maybe it is just me!

[st8farm]

I have been reading with anticipation the collaborative comments on this site for many years now.

It seems to me that there is a stream of consciousness that emerges over time that coalesces around the fact that our physicians don't really have a handle on our infirmities and seem to prescribe medicines and follow protocols for treatment based more upon the fact that they don't want to admit that they have relatively little expertise that they can focus on our specific needs and so it becomes "Well, that didn't work so let's try this. See you in 6 mos. Next patient please!".

I know how cynical that sounds but that has been my experience over time with several physicians. If you have positive experiences I would be overjoyed to hear about them.

[park_bear]

"Well, that didn't work so let's try this. "

That in my opinion is acceptable. What I find unacceptable is when a treatment is causing harm and the practitioner continues it, or what's worse, doubles down.

[LAJ12345 in reply to park_bear]

Yes, went for a visit to the PD nurse yesterday. Haven’t seen her for nearly a year. Hubby told her he was feeling quite good. She told him he was under medicated. He said I don’t want to change anything as I am happy. She said why don’t you try selegiline or rasagiline…take an extra madopar in the morning…

He says I’m happy, I would rather not take anything else. Reminded her that last time he increased dose it literally nearly killed him with suicidal ideation and feeling like his throat was constricting so he couldn’t breathe. Showed her that he can walk well, has great balance, it’s just his fine motor skills in his hands that are a problem and levodopa has never helped that.

She still thinks he should increase dose of madopar and push through the dystonia….

I told her there are many people on this site that have the same problem with levodopa causing terrible side effects and she reckons it’s very rare.

We compromised with she can write a prescription for melatonin so we don’t have to buy it. Almost seems like they get commission for every new drug.

[SAGoodman]

Unfortunately I completely agree, I have had more success with my symptoms from advice on this site than any Dr. I quit going back over a year and half ago.

[SilentEchoes]

Not just you! I'm suspicious that protocols don't cure anything.

[chartist]

I think that whether you are working with only prescribed medicines or prescribed medicines and supplements/alternatives, it will always come down to trial and error in order to figure out what works best for each individual, so I don't blame a doctor for that. If you are not happy with a doctor because they do not seem to care about you or your condition, then it seems prudent to look for a new one.

Art

[TeamPG in reply to chartist]

I’m glad you have some optimism left. I don’t. In my experience with seeing multiple neurologists, it’s all variations on a theme, and none of them good. They have a playbook, and do not deviate from it because it would take too much time to really focus on each patient, and in the end, they don’t really know much more than we do as lay people, assuming one has done a some reading on the topic.

[Ghmac]

Had to visit the MD to get a referral for a neurologist. I asked to have some specific items to a blood test. He refused. Ordered a CBC, testosterone, CRP. Got no where. He asked me to define REM sleep disorder. SMH

[kaypeeoh in reply to Ghmac]

Perhaps the doc had an agenda, that is he was pre-supposing what might be wrong. Why would he order a testosterone level? A CBC makes sense to give him a rough idea of general health. But why a testosterone level?

[TeamPG]

You’re 100% correct and being way too kind in my opinion. My experience in seeing multiple neurologists and talking to MANY others with a PD diagnosis, is that these physicians have a purely academic view of PD, have little to no insight as to what is going on with each patient, and do not keep track of the latest information and research. But they make hundreds of thousands of dollars a year. The last neurologist I saw, did not even discuss physical therapy or what kind of exercise I should be doing, which is really the only thing that’s shown to be long-term helpful. There’s a stable of drugs they prescribe at the drop of a hat, and when that doesn’t work, more drugs to supplement the drugs and then the discussions about DBS, and other brain procedures. The hubris involved here is astounding, and in in some cases borders on negligence and malpractice.