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How to get accurate information and ways to get answers from docs?
Do doctors or specialist ever comment in/on connect?
If not I’m curious about getting specific/accurate information about a blood test and results that vary what seems like a significant amount in one month period of time.
I discovered here about Hyperparathyroidism which I had never heard of until someone here suggested that I read the article here on Mayo.
That said, it is almost a joke trying to get tested and to get straight answers about the condition as well as the tests. If I could record all that has occurred since I read the article and tried to be tested.
If nothing else I read in the article here that some or all of the blood work should be done fasting. None of my tests have been done fasting and the push back that I get just mentioning it is crazy. I thought that perhaps the reason why my blood work is all over the place is because each time it’s been taken has been late in the day. None of the doctors were interested in previous tests. The tests have been done 3 time in one month. PTH is always high but that test alone had one doc call it moderate and another calling it significant.
One doc said we want to know why it’s high, the endocrinologist did an ultrasound and reported to me that where there once was two nodules no there appears to be more but that an ultrasound can not determine if any of them are the gland or just benign masses. That said the hormone is high.
Even my Vit D has varied a lot in one month; going down while taking 50,000 a week.
Lastly no one who is listed including Mayo will talk over the phone unless I’m referred.
Does anyone know definitively if the test needs to be done fasting and is it possible to have radical swings in the chemistry they are looking at to determine a plan going forward.
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@colleenyoung I too like the portals. Using that assures me that the doctor gets exactly what I am saying, not a nurse’s interpretation of what I said on the phone.
My PCP generally seems to schedule me for a long appointment so I almost always have enough time with him. I’m probably his patient with the most problems.
I think before choosing a doctor we need to do as much research as possible and hopefully get input from people who use that doctor. I have also asked other doctors at the same medical center about doctors. Sure, they will never say anything bad about a colleague but you can often discern their real feelings by how they express themselves.
Sometimes I like to schedule at the end of the day or just before their lunch break because then they are not rushing off as much.
JK
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2 ReactionsI'm with you on the use of patient portals with my healthcare, @colleenyoung It used to be 'if you don't hear from us everything is OK'! Now I can look and prepare any questions I might have.
The issue that currently bothers me the most is the move to 20 minute appointments, while doctors feel free to keep patients waiting for hours, as you point out. I have never had a doctor tell me I could spend more time with them since they kept me waiting for a long period of time. Tells me immense amounts about how most doctors value their patients' time. While I was my wife's caregiver and the GP (we both had the same one) knew time and ability to focus were extraordinarily challenging for us, nothing changed! Even if I booked a 20 for my wife and a 20 immediately after for me, the office would not allow me to use all 40 for my wife. Crazy to me! In my wife's condition it took the vast majority of the 20 minutes just to delineate her current status and needs. If it hadn't been for her neuro-oncologist her care would have been subpar for sure.
How did I focus on getting good care? For my wife it was very hard since change was a huge hurdle for her, but the moment she entered home hospice care I began begging the hospice medical director to take on her care, which she ultimately did. For me, two days after my wife passed away I quit that GP and even though I have to travel farther I changed to a doctor who runs his own independent office, which luckily is in my network.
This is a tough issue for many of us!
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4 Reactions@IndianaScott I never have to wait very long except with an orthopedic doctor I used to use. I never minded with her because I knew if I needed extra time I would have it. It doesn’t sound as if your doctor was like that. I wonder what made that doctor run so late if they were that stingy with their time.
JK
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1 Reaction@stuckonu I think the rise of ADD is primarily due to it being recognized now. When my son was a toddler he was very active, impulsive, and often inattentive. When I started reading up on this I realized that I had ADHD! When I was a student I was labeled as lazy and as being an “underachiever” because my IQ and other aptitude tests showed intelligence far beyond my performance. I struggled a lot. Large lecture halls in college put me to sleep, literally, so I made sure my son and daughter, who also has ADD went to smaller colleges where classes would be more interactive. I became pretty knowledgeable about both forms of ADD. Neither my son or daughter were medicated. My son’s grades suffered tremendously but he has excelled in life. My daughter’s grades also suffered but not as severely. She is extremely bright and taught herself compensatory methods when studying. She still drifts off, typical of female ADD and that has caused her to lose many things over time.
Both of them are fairly classic.
JK
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2 ReactionsI use a patient portal also with one of my doctors. My other two doctors don’t have that. The neurologist I see and has given me my only temporary relief from the surgical site nerve damage I have, let’s me email him. I will explain why for the most part, known of this is any real help for someone with my medical problems. My surgery was to repair a rectal tear. I have a real problem sitting anywhere. The surgery also caused both my feet to have peripheral nerve damage. That showed up as soon as I came home that evening from that surgery. I can’t stand for very long because of the pain. My trips to a doctors office is rare and only when I get my injections for the surgical site. You would think that would be enough to drive anyone up a wall but I had a surprise waiting for me down the road. I was prescribed the Fentynal patch for the excruciating pain I was experiencing. When I finally had a very bad medical problem, a pancreatitis attack, that was caused by the use of that Fentynal, I decided to detox from that. The surprise was that I have Central Sensitization Syndrome. I also found out that I could no longer use any pharmaceutical drugs. Chemical sensitivity. The reality is I talked to a lot of different doctors and I tried to have conversations about all of this. Their dumb comments, their rudeness, their arrogance at me even questioning them was just too much. Yes I know there are some doctors who try to buck this system, but it is called medical suicide. They won’t get any of the perks if they don’t go along with the program. The neurologist I see, does not prescribed any opiates. He turns away any pharmaceutical rep that shows up at his office with this idea because he knows how damaging that crap is. Other doctors go along with it. He doesn’t get a lot of patients because of it. This situation you might find interesting, I did an have experienced it first hand. If I need to go any doctors office for any reason, and since I can’t really stand for very long or sit, know of these place can accommodate me in having a place I can lay down so I can wait for the doctor. I can’t last that long and just have to leave and go home. Weird since they are suppose to do this.
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4 Reactions@goldleaf I am very sorry for all you have gone through. I believe that no medication is without faults but sometimes the faults are worth it, particularly if a patient is in extreme pain, or if the medication can correct a problem that can cause serious health problems. Not being able to use any must make it very difficult for you to deal with the pain.
I winced when I read that the surgery was to repair a rectal tear. When my son was born he should have been a caesarian but the arrogant doctor who was subbing for my vacationing doctor did not do one. My son was big and "sunny side up" so I tore all the way through my anal sphincter. I was in pain for months, particularly riding in the car. It sounds like you still have pain after the surgery. I never had anything done for mine, it just eventually healed on its own, but it took many months because of course when I emptied my bowels It would aggravate it. I hope your pain does eventually resolve.
JK
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3 ReactionsThank you for reply. You are correct in your idea on medication but I think you are missing my point. Sometimes I leave out what I want to say. Are you familiar with the use of Fentynal? I wasn’t and it cost me. I have spent sometime researching Fentynal so I do know what I am going to tell you. First of all it was never intended for people with chronic pain. It was suppose to be for people with terminal cancer or for patients who had surgery that caused extreme pain and only for a few days. It is a synthetic of heroine and 5 to six times stronger. Real bad premise to give this to anyone on a long term bases. As it has turned out, it is criminal. Those people who manufactured and sold doctors on this idea of use are being sued. Too bad it took thousands of people’s lives before someone woke up. That is modern medicine and my one of my complaints about it. It nearly took mine and no one did anything for me until I did. I was on this crap from 2011 to the end of 2017. I was in hell the whole time I was on it. Not one doctor I was seeing even paid attention to my symptoms and they were obvious. They fact that they were making money off the prescription really add to the whole mess. Not everyone has chemical sensitivity like I do, so I only needed 25 mg to subdue my pain. That didn’t work out for everyone else. Those people needed twice as much and they suffered their fate sooner. I use to go to this supposed pain specialist clinic. Since I use to work in an area where there were a lot of drug addicts, the similarity’s hit me when I went there. People were stoned out of their minds. One day on a visit of mine this older gentleman was riding up in the elevator with me. He told me this place was great. He told me he could get anyone of a number of pain killers here and started tell me the varieties he had access to. Candy, he was talking about this crap as though it was candy. Who ran this place, doctors. Not drug dealers, doctors. If I said I was in extreme pain to a doctor and since I was on a low dose, I encouraged to up my dosage. I never did, it sounded stupid to me. They never paid attention to my decline in over all health and they just give a dam. That is way drug dealers operate. Then I have heard the excuses as to that the doctors were misinformed about this drug. The pharmaceutical reps who were promoting this crap, weren’t telling them the truth about this drug. If it were someone else other than a doctor, you might get me to buy that. If I was a doctor why would I take the word of a sales rep with little to no medical training of any kind and not read up on this medication myself before giving it to one of my patients? That is also criminal. Ignorance in the eyes of the law is no excuse I use to hear from my brother and he was a lawyer. This part also pisses me off. Even when the doctors that I see now, who knew what had happened to me and all my medical problems that this crap had caused me, they didn’t say a thing like you need to stop using this stuff. Since I don’t know how much you know about where I was at at that time, I was starving to death. I had lost about 40 lbs. I think I mentioned that I had a pancreatitis attack. After that my pancreas had stopped functioning. No one could figure out why I even had that attack let alone why I was starving. There was no physical damage to my pancreas and they had done all the tests on this subject. One doctor even suggested that I should have my gallbladder removed. That would have been so much better!! No one ever looked into the medication I was on as a possibility. I only was on two. I have thyroid disease so that is one of them and Fentynal. All I did was look up Fentynal and possible problems related to it’s use. It was there in plain English and even my 5 year old grandson could read it. Stupid doesn’t describe this situation. I decided to stop on my own. I told my doctors that this was what I was going to do. Only one of them was willing to help me in this and it wasn’t much of a help as it turned out. I had no idea what would happen during the process of detox from this stuff. I have only heard it described from some people I knew and by reading about this. The neurologist I was seeing was the one who agreed to help me in this.and prescribed two medications to help in this detox. I did this at home. I tried using those medications and the made things worse for me. I couldn’t use them. Chemical sensitivity. The first time I took just one pill, and tried to go to the bathroom, I passed out. All I did is get up from the chair I was sitting in and the next thing was waking up with this large knot on the back of my head. The room was spinning around and I couldn’t focus. There was this dent in wall where I had smashed the back of my head into. The rest of my detox was drug free. About three days into this detox, my pancreas started working again. One of the weird things about have Central Sensitization Syndrome, at least for me, is I can feel everything, maybe too much. The feeling of starving is awful. That feeling stopped and I could see the steady improvement of weight gain that was happening. I was eating the same quantities and quality of food and only weight loss everyday, Now that stopped. Everyone feels pain. People that have Central Sensitization Syndrome feel it 4 to 5 times worse and that is only one aspect of this syndrome. Here is something you may or not agree with me on but I find it a reality. Almost all pharmaceutical drugs that are man made eventually will cause you some sort of problem if you use it long enough. Your body is not designed to have that stuff in it. You can’t process it. Yes I am a extreme case and way too sensitive to that, but I am still a human being like everyone else. The only difference is I react to these drugs sooner, sometimes right away. That is it. There is a reason why pharmaceutical companies now when you see their adds on tv and they put all those possible side affects at the end of those adds. They know this information and they giving you a heads up. They are just hoping that you aren’t paying attention. I find it amusing when the commercial ends with ask your doctor, Really?
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2 ReactionsOne last thing about me, unless doctors come up with a way of permanently fixing your nerves or your nervous system, there will be no relief from the pain you are experiencing. The damage that was caused by that surgeon will never heal and the pain will never go away. Reality is what it is the rest of this show by our healthcare system is just that, a show.
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4 Reactions@goldleaf I apologize for not understanding the extent of your problem. It really is terrible when doctors line their pockets with money from pharmaceutical companies to the detriment of their patients. Fortunately, I don't think this is typical. I have not had that problem with doctors, although I have had other problems.
A few years ago the local paper published how much each doctor in the area had received from drug companies. It was an eye-opener. One of our close friends who is a doctor was way down, second from last, on the list. He tends to be very anti-drug unless very necessary. My personal PCP, although I have other gripes with him, is also anti-drug. To get anything from him is very difficult.
What has become of the doctor who had you on Fentanyl for so long? That sounds like malpractice to me, and I am a very non-litigious person. I personally have had a couple of things that people have suggested could be sued for malpractice but it's not in me to do that.
JK
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3 ReactionsNoticing what I notice- @stuckonu- This is completely a confusing statement for me. Would you mind explaining this to me?
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