Saturday, October 15, 2011

Another dead end

I saw the new oncologist yesterday and as soon as she walked into the room she took off in a machine-gun speaking style, educating me about why I shouldn't be there.   She shoved me back to the neurologist saying that it's up to him to fix the strokes.  I pointed out the fact that my blood is turning into syrup and went over the related problems like the decreased oxygen saturation in my blood that has led to nasty things like pulmonary hypertension and potential organ failure.  Nope.  Not her problem.  She told me to go back and see the neuro for help with the strokes and find whoever else to fix the other problems but apparently nothing about my blood is her problem.  Silly me.  How did I not know that oncologists are Gods and we're not to trouble them by reminding them that they're also hemotologists? 

The good news is that I don't have cancer.  Yet.  What I have is MGUS (monoclonal gammopathy of undetermined significance).   It's a precursor to cancer so yeah, I have that to look forward to.   It's a half-ass celebration because while I don't have cancer now, I need to keep being tested for it because it's pretty much a matter of time.  But to be honest, I don't really give a rat's ass if I have cancer or not---at least if I did they'd finally *treat* something!  What I really care about is the fact that there is something every bit as deadly and every bit as horrible as cancer happening to me and I can't get one single doctor out of 27 to figure out what it is and do something about it.  Where in ANY medical journey does it say that it's okay to have 95 strokes without being treated for strokes?  Or an oxygen saturation of 77% without knowing the cause and treating it BEFORE my lungs, heart and kidneys give up?   And even tho I can be relatively certain that most doctors don't  care about me or my problems, I care considerably about the fact that my brain is turning into a turnip.

I'm confused because I went in there with a test result showing a spike in IgM.   I had the paper in my hand and while my brain isn't running on all six cylinders anymore, I do still know the difference between the M on the paper and the G that she says I have instead.  She says that her tests are more accurate.  And as for that bone survey, she said I can just get around to it whenever.  Okay, how about never?  Does never work for you because never works best for me.  I'm going to be too busy trying to find a doctor who can actually figure out what's going on with my blood and besides that, I can't afford another however-many-hundred-dollar copay that this bone survey scan is going to cost.  

The neuro didn't want me to come back for six months and had absolutely no intention of treating the strokes. The oncologist said that neurologists are always the ones who treat strokes so I have to talk to him about that. (I'd disagree with that because when my dad had two strokes, they called a hematologist, not an electrician)  And who treats the hypoxia (low blood oxygen saturation) when two pulmonologists and a cardiologist have given up if it's not the hematologist?   She didn't know but she's sure it's not her or anyone else in her specialty, as was verified by the first hematologist I saw.   So this was a very expensive trip down yet another dead end and now I'm back to where I was, except more tired, more sick, and more screwed up than before.

I'm sorry to sound so negative.  It seems to have become impossible for me to remain positive these days.  I found out one reason for that is because the EEG showed there's some damage to my brain in the area that controls emotion, and positive-thinking may be one of the casualties of the strokes...but as much as anything, I'm just tired and ready to give up.  There's no where else to go and I've run out of doctors and options, especially since none of those 27 doctors are willing to treat anything.    The oncologist wanted to know why my rheumatologist isn't treating me with immuno-suppressant drugs.  Um, because my rheumatologist thinks I'm too young to get tuberculosis?????   She and I talked about the a-i suppressive drugs a long time ago and the risks are way too high for the small benefits I'd get from them.   Yes my auto-immune system is a psychotic over achiever and no, killing it is not the answer.  The list of "did you?" and "Yes I did" is seemingly endless and there's no door marked Exit to get me out of this mess.  

So that's where things stand now.   Days of being too sick to get out of bed, a brain that looks like swiss cheese, too many medical issues to even think about, and there isn't a single doctor who wants to see me again for at least six months. 


  1. This sucks! No one wants to be responsible to make a decision it seems. What the hell is wrong with doctors today? Malpractice insurance to high? They need to conference and come up with some treatment!

  2. dont what to say really...such a pass the buck attitude!!!!! they should all be struck off!! sending (((hugs)))) anyways :) Linda x

  3. My husband has gone thru the same thing. 8 Docs and no treatments for a nerve in his leg that gives him fits. His back mri shows damage but would be a 50/50 chance of making things worse with surgery. His neurologist says sorry can't do anything but keep me in the loop... Ya of course dont want to miss out on all that insurance money for each visit... Hubby lives in pain and takes pain killers and trys to go on with his limited life. I hope that things get better for you and prayers going up for you. Hugs! LJ

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