This morning I made an appointment for what will be my 11th MRI scan so far. During yesterday's neurologist appointment the neurologist confirmed that I am indeed still experiencing the numbness and pain in my right leg. With the tests on the cerebrospinal fluid (CSF) - drawn from my body during a lumbar puncture a while ago - showing up all clear, the neurologist wanted to check for the next few items to investigate.
Specifically myelitis (infection/inflammation of the white or grey matter of the spinal cord) [1], and a spinal disc herniation [2]. Ergo another MRI is needed, this time of the lower part of the body, since the first scan just covered the part up to and including part of the chest area.
With the upper part of my body seemingly fine, even with the many white spots (lesions) seen in my brain, the focus now shifts to the rest of my spinal column and the nerves inside it. Things will be interested if neither of these two presumptions turn out to be true and there's neither a herniation, nor any indications of inflammation. What will the next step be, if any?
Based on the observation that the numbness in my right leg seems to be linked to my monthly cycle (discomfort and pain starting some time into the first week, worsening until tapering off over the next two weeks), it would be reasonable to presume that something is swelling up or expanding in mass so as to press on the sciatic nerve that innervates the leg.
Along with the pain, numbness and discomfort in my right leg and hip, I also experience pains and discomfort in the lower abdomen and genital area which would suggest that something is inflamed or at the very least overly sensitive and irritated. This to the point that toilet visits around this period can have me literally in tears afterwards from the pain due to the pressure on what feels like a severely painful vagina.
On Monday I contacted the endocrinologist who I last saw in 2016 and who was also responsible for getting me a bit of medical help and some answers about my body. She had mentioned something about a gynaecologist who might be able to help someone in my situation, which seems like the kind of person I could use right now. So far I haven't received a response yet, however.
It will be interesting to see how this big puzzle that is my body and its issues continues. Will it be the detour via the neurologist which ultimately will lead to the discovery of what is really going on inside my abdomen? At this point I at least really appreciate how this neurologist continues with this investigation until all reasonable causes have been looked at and dismissed. The first MRI scan surprised me, because I had expected to be dismissed for a symptom as vague as 'numbness in my leg'.
The lumbar puncture was a surprise, too, and I honestly had expected yesterday's appointment to be the last one. Just an 'everything looked fine in the test, nothing else we can do now.'. Instead the neurologist surprised me again by looking briefly whether a scan of the lower part of my spine had been made already and ordering a new MRI scan when he didn't.
My feelings about this 11th MRI scan and second scan for neurological purposes are a bit mixed. I don't really expect them to see anything, yet if they do it could be something bad, possibly requiring surgery. On the other hand, if they find the cause of this numbness and such, that would be nice.
There is also the consideration of just how far down the torso the scan will reach. If they'll go just for the spinal column, then the coccyx is roughly at the level of the bladder, which would miss a big section of the lower abdomen. If they do however scan the lower abdomen or a large section of it, the results could be even more interesting.
It's been a few years now since the last MRI scans were made of my abdomen. Before my body starts its true puberty back in 2015. With my body presumably having matured significantly inside as well, it might be that one can see distinct changes on an MRI scan, including the presence of a proper lining inside the vagina, which was previously mostly absent.
There I really hope on one hand that they cover that area, as even with imperfect MRI settings for soft tissues it could still show a lot. On the other hand, I would be a tad nervous after the scan to face the radiologist if they went low enough and I have to explain my intersex condition. Would be worth it, though.
With general medical help for my intersex condition and its complications still being practically absent, this specific investigation into just this numb leg might be my best bet to get some answers. I truly hope that this neurologist will continue to surprise me.
Some surprises are really quite pleasant :)
Maya
[1] https://en.wikipedia.org/wiki/Myelitis
[2] https://en.wikipedia.org/wiki/Spinal_disc_herniation
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