Friday, March 15, 2013

A Very Good Article that Explains so much about CFS/ME & many other often "unknown chronic illnesses"

A friend of mine has this posted on her group this morning in FB. It so relates to what is going on even in the realms of Lupus and other autoimmune patients. I also wrote this just before I read the article, and it explains why I feel we have such a "downgraded" medical situation here in our nation. There are lots of things "broken" here, and the way patients in the realms of chronic illness is one that is definitely busted for sure. All too often when we "enter" the medical realms with a chronic and sometimes rare set of bizarre symptoms, it takes often YEARS to get a proper diagnosis. We can say that is for many reasons, from the screwed up way medical personnel are educated, from way too many doctors, too highly specialized, yet do NOT communicate with other doctors or their patients, so we get left in the middle. Then it is like "pulling teeth" to find out what the hell is wrong with you. I have also been given a different diagnosis, by several different doctors. One doctor sends me to another, and that doctor does his own set of tests, tells me something entirely different, then send that over to the first doctor, who then send me office to yet another specialist who reruns the SAME TESTS!, and gives me some other diagnosis. Well on the merry-go-round you are on then. You are sent from one doctor to another, none of which have the others information, thus everyone has their own opinion. How can a patient really BELIEVE what the hell they are told, when you are told so many different things Honestly my latest diagnosis for the double vision, the high abnormal myoglobin, the severe pain in my legs and back, has been diagnosed by the latest neurologist of suspected myasthenia gravis! Well talk about scary! Then I know the myoglobin situation could lead to acute kidney failure if it is there long enough, etc. But my doctor that told me that one is out of town for the week. I really need to talk to him because he left a message and told me to STOP a medication that I AM NOT ON! So, they call to set up another blood test in three weeks, yet it will not help to do that, if he thinks this other medication is causing the issue, yet I am NOT taking it. As I said, it is literally a night terror if you sit down and listen to what I have been through. I know people probably do NOT believe what all has happened and not happened with my illnesses. It is nuts, insanity, and the sad thing is rather than getting better, it is just getting worse! Here is the URL to the article, and a copy of my post from FB this am:

(I had been answering a post from a dear friend who lives in Malta when I wrote this)

You know Suzi(by the way it is good to see you) I trust MY OWN diagnosis almost better than I trust the doctors at times. It may be greatly different in Malta. Here our doctors are too filled up, too busy, have way too many "irons in the fire" so to speak with paperwork due to the government telling them what they MUST do because of Medicare, they have a shortage of GOOD nurses, our hospitals staff are not well educated at times, and the things WRONG here go on... thus our doctors DO NOT have the time (say like I do_ to sit down and really PUT all of the pieces of a patients medical facts down, study them all together, and then be able to know what is going on to make a correct diagnosis. Another problem is we have TOO many specialists now. Every little thing has some kind of "specialist" now, and every one of them wants to do their own testing and run bills up higher and higher with us and the insurance companies. BUT, then rather than SHARE INFORMATION so all of your doctors know everything going on, THEY WON'T! I have spent hours and hours, on the phone, paid money for, went and picked up all kinds of medical tests and the results so I can take them, copy them, and be sure all of my doctors have them. Then you know what, most of them never look at them. Other than my family practitioner, and possibly my Rheumatologist, the rest of them could not tell you anything about my medical issues, other than something they "worked" on, did surgery on etc. Right now, I know for a fact my pain doctor has had my EMG/NERVE conduction study records for a week. In fact they called me on Monday and told me they are ON HIS DESK! I have YET to hear from him. Now I cannot MAKE HIM look at them. I did everything I could to get them there to him. I checked on them, had them re-faxed, called to make sure his office got the fax... and now I know they are on his desk. Does that mean maybe he is out of the office or something? Well not one soul had told me that. So, yes I trust him as my pain specialist but I feel somewhere in his office is a huge break down of communication. IF things were right, with him, staff etc.. he would have already seen those tests and called me. Now here it is Friday, and I need to call for a refill of the medication he had given me for this nerve pain, yet he has not even seen the tests results, plus he does surgery and is only in the office half a day on Fridays. There are lots of issues with our nation now from the entire Medicare thing that hurts doctors, hospitals, patients and the nation, along with a lack of GOOD doctors (doctors used to be doctors because they wanted to help people), now there are those out there that just are in it for the money (as per the neuro-opthamologist I saw, that just is an ass), and as I said I feel this business about them not often times sharing information, thus us, as patients must try and get the paperwork to them, THEN get them to see it!, plus we lack medical STAFF THAT CARE! I have seen more NOT trained staff, or they do not CARE, or something is wrong, from the hospitals to especially the doctors offices. They do not care about doing their job correctly, OR they just do not care at all. Maybe because they do not get paid enough, lack the proper training, or something, but even my primary care doctor cannot keep staff! Every time you go in, just about the time someone their gets to know you as a patient, they are suddenly gone! I bet he has been through 50 different staff people in a year. I am not sure if that is because of his huge patient load, long hours, pay amount, maybe someone in the office is impossible to work with(they have an office manager that is just a jerk), but something is wrong when a busy office, that has plenty of work to do, cannot keep good staff there. So, we have all kinds of issues, that also relate to reasons WHY we as PATIENTS get left out, overlooked, mistreated, misinformed, and then that can lead to misdiagnosed. You are right you must BELIEVE in your physicians and trust them that they are diagnosing you correctly or you can never trust that you have been treated for what you need to be treated for correctly.

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