Monday, August 28, 2017

Research Mode: Expert

photo of a lab setup with beakers and test tubes filled with various colored liquids; under this is a white background with green text "Research Mode: Expert" under which is black text "Not Standing Still's Disease" and under that is a line of diamonds in the same green color as the other text

When I was little, doctors couldn't figure out what was going on with me. We had to find an answer and bring it to them. This seems to be a running theme in my life.

My recent "bladder cramps" (we think?) were investigated. Nothing odd showed up on my transvaginal ultrasound or in test results. *I* had to check back in with my GP (also an OB/GYN) and see if she thought pelvic floor therapy would be a good idea. After several days (and asking me to re-explain symptoms in my records from our last visit), she said yes.

Now, with another neurological test on the horizon, I find myself doing the same thing. 

[Book with a dark background and cells/biologic drawings on it; "Pathophysiology: the biologic basis for disease in adults and children" by Kathryn L McCance, Sue E Huether, Valentina L Brashers, and Neal S Rote]

Obviously, having a rare disease is tricky. Knowing more about my familial history of weird undiagnosable neurological stuff makes it extra fun. Naturally, I'm starting to do my own research on some things.

Because, again, running theme.

My latest MRI showed a bulging disc that was noted to be more severe in my records (that I received on Friday) than was listed in my test results. Instead of listing just that there is a bulging disc at L5-S1, it lists the following:

L5-S1: There is a broad-based disc bulge with more prominent far lateral components causing mild-to-moderate left and mild right foraminal narrowing. No canal stenosis.

Now, that makes it sound worse than a simple wear-and-tear or overweight-patient version of a bulging disc, right? I think so.

What is also important to note here is that the bulge is worse on my left side, just like anything else in my body. Based on my pain, I knew this already. However, it is somewhat bilateral (on both sides), which is important to note as well.

This also sounds much more like it could be contributing to my symptoms - and even potentially the "bladder spasm" stuff. Of course, neither my neurologist nor my GP/GYN have addressed the disc... which pisses me off. 

In addition, I've begun having headaches that start intensely anytime my head goes forward past a certain point. When this has happened before occasionally - mostly after being very physical - I've been able to ease them by relying on my chest for this movement as opposed to my head/neck. That's not the case now, nor is it only when I've been active.

It really sucks, especially on top of the other symptoms. That said, it does keep pushing me in the direction of more rare conditions like a CSF leak. To be honest, when my symptoms could be relieved earlier this year with being horizontal, I thought this could be a thing - and this can happen in the spine.

I should know more once I get my medical images and/or after my EMG and nerve conduction test on Wednesday. I'm hoping I can also start a medication for migraines, which should have been done already.

Oy.

I'm not ecstatic about these tests. However, I know that they might help yield some answers. I'm just hoping the range of testing that lies before me won't also cause a ton of extra pain. I'm not equipped to deal with as much as I've been facing as is. Adding more in without adding in any actual painkillers might, well, kill me.

Not if I find the answer first.





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