Tuesday, April 16, 2013

Reaching Beyond The Realms of Symptoms to Try and Help Your Own Self with your illness...

Well, yesterday after waiting 11 days, I FINALLY get a phone call about my abnormal "myoglobin" blood work. The call at first was, this is "she" from the doctors office. The "nurse" said to call and tell you yes the test has NOT changed, it is still high and not normal. Then there was silence! I am like okay, now WHAT?
I guess all they were to do is answer my question, and leave me hanging? So, I got put on hold for at least 7 or 8 minutes, maybe more. She comes back finally with well the doctor said to "stop your muscle relaxer" (which I need), it "might" cause this, but more than likely it is your MTX and of course you cannot stop that one. So, I am like okay, well I am in horrid pain, especially in my legs, and something needs to be looked into. I want an appointment. We had been talking while I was on hold, and decided this was crap, I need to go into SEE him in PERSON! She comes back on trying to say to "redo" blood work, yet again in 3 weeks, THEN come in the following WEEK to see the doctor! I am like NO! I ALREADY have those appointments! Hell, it so happened those are regular appointments for followups from my 6 month visits! As I told her, I am IN PAIN, and I feel this needs to be dealt with SOONER than 4 weeks... she messed around finally said well he can see you on May 1st. Well, hell that is still two weeks away, but better than 4! It is like what I said below on a Facebook post, we are patients with "chronic issues of pain and illness". We tend to "KNOW" our own bodies, symptoms etc, and are somewhat able to pinpoint often times what is wrong just because we have the time to research our own stuff. Rather than as a doctor who has hundreds of different illnesses to know, we usually deal with a few, thus of course it makes sense we may have a better knowledge of what is wrong, not all the time, but often times we either already know or at least understand what they tell us. IF I, as often I do, "Google" my "symptoms", I come up with something the almost same each time. Well of course than can happen due to frequently illnesses with chronic pain, autoimmune illnesses etc have many of the same symptoms etc. But, when you "dig" deeper into all of this, and can add your tests results etc.. we tend to find a picture of what is happening. NO I am NOT a doctor! Never said I was, BUT I think for the most part, WE do understand better at times. WE have doctors that get "bent out of shape" if we give the impression we know about our illness. Of course I have to say, I also have some great doctors who truly appreciate the fact I do look things up, and I know about my own issues. It helps them to help me. Yet, I of course want to weigh in what they have to say. I might research something, and get one impression, yet that doctor has either seen something in his practice or knows something due to his schooling, that I may not could have known. Thus of course, they are more proficient, I expect them to be. I certainly would not want to see a physician that never could give me a correct diagnosis and treat me. IF I had to tell them every time what was wrong, I don't feel that would be the correct physician for me. So, we have our incredible doctors, our insane doctors (met a couple of those), the "luke warm" ones that sit on the fence with stuff, those that are test happy, those that are just quacks, and those that are exceptional in all ways. They communicate, the know their stuff, they are willing to LISTEN TO THEIR PATIENT, they do not get offended if a patient does their own research, and there are a few that should not be even in practice. When you have chronic health issues, you tend to go through all of them. I always pray that we find the best, the cream of the crop, and for the most part I have.
What I do find though, is that I may have 5 that are incredible! Then have one that is just not at all what he or she should be. That ONE that is a screw up, can give you hard feelings against the others. I find that if one of my doctors has been a jerk, then I am leery about the others when I go see them.
So, after hearing all of that over the phone yesterday, I sit here this morning, my arms, hands, feet and ankles burning like I am on fire, and I think to myself, must I put up with this another 2 weeks? Do I go back to my pain doctor, who honestly up until yesterday when I found out the blood work is STILL abnormal, I was ready to have the pain doctor do surgery and check this pump. I had resolved myself late last week to face maybe it is the pump or the catheter from it. Maybe I should let him put me to sleep, and take a good look at them. It seems so ridiculous and almost impossible to have so much "supposed pain control" methods, yet still be climbing the walls in pain! It does not make sense. What I also have come to find out, different types of pain, require different types of pain management. Some pain responds to the regular method of pain medications. Others take medications that reduce inflammation. Some, which is what I think I have developed is nerve pain (either nerve- neuropathy) or it IS MUSCLE degrading, where my muscles are inflamed and I have a "Myopathic" type of situation. Which, can be extremely painful. I just began to read on those, more extensively over the past two days. One of the FOUR NEUROLOGISTS that I saw, told me his first thoughts about the severe leg pain, the double vision, and all of the new symptoms etc, with the tests indicated a myopathy called, Myasthenia Gravis, which is an AUTOIMMUNE ILLNESS by the way. But, the symptoms "fit" several of these, thus the "hunt" for what is correct is on for me. I refuse to lie down and NOT find out what is wrong! Somehow, somewhere, myself and one of the doctors have to fix this. I refuse to allow this horrid mess of pain and illness ruin the rest of my life!

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