I had put in a call before about my migraines and he ignored it, telling me at my next appointment, "I don't treat migraines, call your GP."
Uhm, okay, but you just prescribed a cocktail of meds that I wanted to make sure weren't causing a problem, but whatever.
Then, I had a colonoscopy and biopsy last week, and had a horrible reaction to the sulindac he had prescribed me. I'd been having some pretty awful side-effects, but was trying to stick it out because it was doing a good job of fighting the inflammation. But after the colonoscopy, when I was able to take my meds again on an empty digestive tract, all h3ll broke loose. It was bad. I called the rheumy's office on Monday and left a message with the desk that I was having a bad IBS reaction to the sulindac and needed to speak with the dr. The receptionist said she'd have him call me right back.
Right back turned out to be when he felt like getting around to it which wasn't until today, Wednesday, late afternoon. Even then, it wasn't him calling, it was his nurse, leaving a message for me to call and make an appointment.
This was the Rheumy that didn't bother to read my file before prescribing meds. He didn't bother to read that I have had very bad IBS-D for twenty years. I'd never taken Rx NSAIDS before. According to what I've read, I should have been monitored rather than ignored.
So I called my GP and asked for a new referral. The next closest rheumatologist is 50+ miles away. This one was about 40 miles. I got a call today to let me know the practice is booking appointments out in June, and to get in to my GP in the meantime for help. They'll put me on a waiting list for a cancellation but don't want me going without an anti-inflammatory in the interim. This sounds almost promising?
I called my GP back today and they can get me in tomorrow am before my neurologist appointment. I had a urologist appointment yesterday that was one of the best doctor's appointments I've had to date. I found a keeper in Dr. H. and will be going back to him, although he's convinced there's no possible way I should be alive. (long story) He spent over an hour and fifteen minutes just listening and bouncing ideas back and fourth. I've been told for over twenty years that I have an overactive bladder, but thought maybe it was maybe something like IC when I was sent for AI testing. GP thought maybe it was trigonitis and sent me to the urologist, Dr. H. He thinks it could be something as simple as diabetes insipidus! I'm doing an input/output now and will know more next week. I had brain surgery in '90 that could have started it, and Sjogren's can cause damage that can bring it on as well.
I'm not sure how one person can acquire so many unusual/uncommon/rare conditions/diseases in such a short lifetime, but I seem to be trying to collect them. I've had several specialists tell me my body is falling apart now, and at 46, I think I shall donate it to science if there's anything left when I'm done with it.
Smudge, AI diseases tend to bring their friends.
A number of years ago, an artificial intelligence program was written to diagnose diseases. It was not considered accurate enough to deploy. It was 98% accurate. The doctors that it was tested against were 65% accurate at the time. The recommendation was that the two should be used together. The AMA fought that suggestion since it would take work away from doctors.
Coming from an electronics background I have had to learn how to troubleshoot systems. When I went into computer programs so many years ago this troubleshooting skill was very useful in debugging computer programs. I often use these skills when I ask questions of doctors that frustrate my doctors. It is not that I am trying challenge their knowledge it is just that often the logic they appear to use does not seem to have any basis in reality. On complex systems it is vital to understand the interaction of subsystems. This is a troubleshooting skill. Power, Clocks, Data, Program was a crucial sequence for troubleshooting dedicated computer systems.
The big thing that I see in troubleshooting dis-ease is to first identify the malfunctioning systems and what is causing the malfunction. Too often I see this portrayed as magic. Often because I say so. This tells me that I may be dealing with someone that does not understand what they are talking about. As an example, Last night I went to an internet business seminar. When I mentioned that I had pulled down DARPA net in the 1970's they had no reaction. I asked if they knew what DARPA net was. Still no reaction. For those of you that do not know what DARPA net is. It was the predecessor and backbone that the internet as we know it was created from. There were so many inconsistencies that I did not enjoy the presentation but I did enjoy the diner afterward.
Thanks, Joe.
I tend to "troubleshoot" myself, as well. And I'm always looking to find a connection, whereas the doctors don't. And on this we will always butt heads. I know there is a connection between my frequent urination and my IBS-D. They go hand-in-hand. When one is particularly bad, the other flares up as well. After 20 years of dealing with it, I can't believe it's coincidence. Common trigger? Possibly, but it's not something I'm doing or exposing myself to. My new urologist is willing to take my word for it and believes this. What he finds hard to believe is that I have been getting by on as little fluid as I think I have while still having urinary frequency/urgency. He said after I do the input/output diary, one of us will be very surprised. Well, so far, I have to agree with him, one of us is going to be extremely surprised, and it's not going to be me. I'm actually looking forward to my next appointment with him. LOL
Sigh, the entire medical thing is so difficult.
FIRST, medicine really only knows the tip of the iceberg of the human body, in terms of what's going on.
Everything is way way more complicated and intertwined than anyone wants to believe.
Second, I did a connect the dots process of my own. Establishing a unifying diagnosis, to explain all my conditions and symptoms and craziness .
it made a lot of sense, but it was wrong. I thought everything I had could be traced to auto immune conditions. Not only do I test negative (or normal) for ALL conceivable AI conditions, but the real culprit for some conditions turns out to be totally different than i thought!
The tinging in my feet wasn't at all related to the tinging in my hands. The tinging in my hands is carpal tunnel. Who knew? The tingling in my feet ad legs is idiopathic neuropathy.
I seem to be a mass of unrelated problems. But after a while I began to realize that there aren't all that many great treatments presented by the medical community, anyway. As Joe knows, for example.
Breathe in: I am Breathe out; calm. Pretty useful for everything! Thanks to Joe again.
I have 'fired' doctors, Smudge. Not just by not going back, but face to face in cold fury.
You have to do it, to take care of yourself. Just as we can't like everyone we meet, we can't like every doctor.
And some doctors do a cost benefit.....how much of my time will this take, and can I make more money if I don't have this patient at all?
Doctors get overwhelmed just like everyone else, and medicine is a FOR PROFIT enterprise in this country.
BTW a bladder condition called Interstitial Cystitis, an auto immune condition, affects over 50% of people with Sjogren's Syndrome. You may have that.
Keep us posted
Hugs
Elaine
I have often wondered just what kind of electrical signals doctors have in their brain. I am of the opinion that they don't often use their brains because they are trained to depend on all the technology. Now science is good a lot of the time, but there is this little tidbit called common sense and using your head.
I find it totally frustrating that many doctors can't piece things together and come to a logical, reasonable conclusion. They think it should be all by the book and 90% of the time going by the book doesn't happen.
Nurses---at least good nurses who learn and retain what they learn plus apply it to other circumstances--- often have more common sense than doctors. I think that doctors get too hung up on the straight line from A to B and nurses don't see many of those straight lines. We just see the total person and apply all we can from what is told us and what we see.
The doctors treat one little area and then send us off to another specialist who then treats another little area. Nobody gets the full picture and the patient gets mad, and well he should.
The more the medical profession knows the dumber they seem to get. Too many fingers in the pie always confuse things---but tell that to the medical profession. Irish ;D
Gosh I don't blame you for firing him at all!!!!!
Was your GP available? My gp is part of a network and there is ALWAYS a doctor on call if needed. I just loooovve this!! Granted there is somethings they can't help with but at least you get to talk with a real doctor. Heck I had to call at midnight once case the Z-pac prescribed was tearing my gut out. I'd of taken anything to get it to stop.
Also do you by chance have a teaching/research hospital anywhere close? I have all my -ologists at one and they were they ones who actually diagnosed me after 6 years with "the other ones".
Good luck with your new dr!!!