Messages - Vurbal [ switch to compact view ]

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Living Room / Re: Best forums for consumers and online buyers ?
« on: June 15, 2022, 08:03 PM »
In most cases it seems like online communities related to a particular product are usually the best resources. Review sites are great in theory, but they don’t really have much appeal to most consumers. Most people don’t want to report their feelings to the great unknown. They want to have a conversation about their experiences.

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Living Room / Re: Like a bad penny...
« on: June 04, 2022, 05:50 AM »
Looks like it’s back on the merry go-round for me. Despite agreeing with me that multiple system atrophy is the only condition that explains all my symptoms, and also that it’s far more likely that I have one rare condition than two, my neurologist still refuses to officially diagnosed me with even possible or probable MSA.

Instead, I have to go back to the University of Iowa, where I can see a movement disorder specialist, you can then refer me back to Mayo. I actually suggested a couple of tests that I have uncovered that would help with the diagnosis, but he pointed out that they’re only available at Mayo.

Is it really too much to ask for a Doctor who understand science?

On a completely unrelated subject, Apple spellcheck apparently knows to capitalize Doctor Who. I’ve also noticed in recent years that Motorhead seems to be a pretty standard proper name for spellcheck libraries as well. I notice Apple doesn’t include the unnecessary umlaut, but I think Samsung does, or at least used to. Come to think of it, Apple used to have it to. I wonder if using the umlaut causes problems in some cases.

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Living Room / Re: Like a bad penny...
« on: May 13, 2022, 11:52 AM »
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.

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Living Room / Re: Like a bad penny...
« on: May 12, 2022, 08:23 PM »
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)
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.

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Living Room / Re: Like a bad penny...
« on: May 12, 2022, 08:15 PM »
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)
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.

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