Thursday, September 11, 2014

My New Diagnosis To Correct My Wrong Diagnosis Was Also A Wrong Diagnosis

I have not been regular the past month.  While that statement does apply to posting on a weekly basis it unfortunately applies to much more.  There is of course the obvious joke and while I am no longer shitting on schedule but that is just the beginning. In the many pains (intentional misspelling of pane) of stain glass that make up the window that is me the lack of regular shitting is in the lower left corner hidden by a column from most angles.  The pains (panes, huh wink?) are varied and some are jagged and are not found a place.

The main reason that I have not posted as often as I would like is simple, I have felt poorly.  All over, the kind of pain that lies on you like uneven chain mail that has been hit with too many maces.  A lot of the pain was taken on by choice.  The choice was not well informed but it was a choice I made none the less.  I went to see a new rheumatologist and she had a theory that I had inactive sarcoidosis and undiagnosed active fibromyalgia.

I thought the new rhumie was wrong.  There are not a lot of people that are up to speed on sarcoidosis and I expect since the TV show House has ended that there will be even fewer people that know anything about sarcoidosis going forward.  The reason this has importance is chronic and refractory sarcoidosis can cause small fiber neuropathy which has a lot of cross over with fibromyalgia when it comes to symptoms.  In the sarcoidosis rare disease online meet up group there are many anecdotal experiences that have shown that doctors that are unfamiliar with sarcoidosis and have seen a lot of Lyrica ads think everyone presenting with those symptoms has fibromyalgia.

This post is going to drag on and be about sarcoidosis and here we go.  There are no tests that can tell the difference between fibromyalgia and small fiber neuropathy, there are things that can definitely cause the scale to lean in one direction or the other but nothing definitive.  One of those things is if you have a positive EMG (if you want to know about an EMG Google it because I am to lazy to link to the Wikipedia article, better than that go to YouTube and be warned there are two inch needles being inserted into extremities and then electricity is run through the needles) so back to it if you have a positive EMG it almost always means it is not fibromyalgia.  Now I have a positive EMG and communicated that to my doctor.  She did not mention to me that she did not know much about sarcoidosis and I was also unaware that if you have a positive EMG it excludes fibromyalgia.

If I had known these things I probably would have avoided the next three months of serious unpleasantness.

As I think about I wonder if the new rhumie thought that I was mistaken about my EMG results or did she think I was lying about them?  I will give her the benefit of the doubt and say she thought I was mistaken.  Anywho I started to taper off my sarcoidosis medications and started to taper up on a drug for fibromyalgia.  I was under the impression that if I got better or stayed the same I had fibromyalgia and if I had bad trip so to speak it meant I had sarcoidosis. This was a three month process and at the end of month one I was in bad shape, by the end of month two I was in worse shape, by month two and a half...

Well by two and a half months the darkness started swirling up around me, it is like that ice palace from the movie Frozen if it had been done for the cover of a Black Metal album.  Things start to get bleak when you can not remember the last time you had a moment of comfort.  It has been years since I have had a moment without pain. These days I just aim a little lower and shoot for moments of comfort.  Of course this only relates to the physical but to my chagrin the physical seems to have a lot to do with the mental and emotional.

I can't remember what I have documented over the last few months and I do not feel like going back and reading my own posts, it is like hearing a recording of your own voice.  Over the past year or so I have had several situations that generally would be considered stressful and all though I can not say there is a definitive causal relationship between stress and my sarcoidosis flaring but I can say without a doubt there is a correlation.  This rubs me the wrong way, I hate that my mind can effect my body.  I will be honest I am not sure why I hate that but down to my core I can feel the hate.

I am surprised that I have viscera but I can tell that I have viscera because that is where the hate is for stress effecting me is located, right next to where I keep my methane.  I will explore in the future why I hate this stress thing, I do not know if I will find an answer, when I say I will explore in the future it usually means I know but I am tired of writing but this time I do not know.