Main Area and Open Discussion > Living Room
Like a bad penny...
Joe Hone:
What you are experiencing sounds familiar. My wife is a former ICU critical care nurse who now works as a Nurse Practitioner. In her view, most physicians practice within a framework of what they were taught in medical school. Too often she finds physicians are stuck because of this, that it leads to an attitude that there isn't anything new to try. Thus, different generations of physicians practice differently, as do physicians from different medical schools. She offers no solution other than what you are doing, and that is to find a physician who is familiar with your symptoms, or who is willing to think outside the box. Here's hoping you find the right one soon!
40hz:
Hey Vurbal!
Been awhile since I last dropped by. Sorry to see this news first thing.
Wow! That’s a lot to have to deal with, huh?
No advice. And no idea what to say either, other than good wishes and hope this all gets worked out for you.
Vurbal:
What you are experiencing sounds familiar. My wife is a former ICU critical care nurse who now works as a Nurse Practitioner. In her view, most physicians practice within a framework of what they were taught in medical school. Too often she finds physicians are stuck because of this, that it leads to an attitude that there isn't anything new to try. Thus, different generations of physicians practice differently, as do physicians from different medical schools. She offers no solution other than what you are doing, and that is to find a physician who is familiar with your symptoms, or who is willing to think outside the box. Here's hoping you find the right one soon!
-Joe Hone (April 06, 2022, 10:22 PM)
--- End quote ---
I’m working on getting a new neurologist now, but I think I may have figured out what it is. It’s extremely rare, and there’s no cure. After watching a couple of presentations about it on YouTube, one for patients and one for doctors, it turns out most people are misdiagnosed for years.
If I’m right, my only hope of living another decade is getting into a drug trial. Otherwise, I’m likely to die from respiratory or cardiac problems within the next 5 years or so.
Vurbal:
Hey Vurbal!
Been awhile since I last dropped by. Sorry to see this news first thing.
Wow! That’s a lot to have to deal with, huh?
No advice. And no idea what to say either, other than good wishes and hope this all gets worked out for you.
-40hz (April 09, 2022, 06:45 PM)
--- End quote ---
Thank you! I’m still fighting, and still playing bass. In fact, I’ve got a wonderful Kiesel JB5 that I’ve barely gotten to play out.
I go to a nearby jam on Sundays, where I at least get to play with some really good musicians, but I’m still hoping to get together with some friends who are putting a band together.
Do you post under the same name on TalkBass? I figured you did, but I just never got around to asking if it was you. I post under my real name (Rich Fiscus) there.
Vurbal:
Now I’m really pissed!
I just found an article, which mentions a local doctor who was treating a patient with MSA.
https://www.desmoinesregister.com/story/news/2015/04/07/dan-miller-rare-disease-multiple-syndrome-atrophy/25439089/
It turns out she works in the same office as my neurologist. I sent him a message through their app asking if he had consulted with her, or anyone else for that matter, about my case.
In any case I’m demanding a referral to see her. I haven’t decided whether I’m going to file a complaint with their bosses about the piss poor treatment I’ve received so far.
I also have my family doctor, who is amazing BTW, sending a referral to an outside clinic. I’ll need a second opinion in any case, so there’s no reason to wait.
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version