Health Update: Nov 2018-Jan 2019

At the end of last year, after almost 3 years of chronic illness, I managed to get 3 new diagnoses in 3 months.

It all started in November.  My fancy USC neurologist ordered a repeat skin biopsy, and a tilt table test.  My first skin biopsy, taken over a year prior, had come back clear, so I didn't expect this new one to yield any results.  This skin biopsy, however, came back positive for Small Fiber Neuropathy, something I had been convinced I had since the early days of my chronic illness.  Seriously I knew I had this disease all the way back at the beginning and no one listened to me.  It didn't help that the last biopsy came back negative but apparently there can be false negatives which would have been awesome to know at the time.

Then came the tilt table test. For those who don't know, a TTT is a test in which you lay flat on a table, your vitals are taken, then the table itself moves into an upright position and your vitals are monitored for like 45 minutes.  The test is used to test for functional conditions of the heart.  In a normal person, the body adjusts when you go from sitting to standing.  The heart rate rises slightly then returns to normal, and blood pressure does the opposite (dips slightly then returns to normal.) In someone with a functional heart condition, their heart rate rises upon standing, and continues to rise which makes the body act as though it's running on a treadmill.  Anyway, I got this test and sure enough my body acted like I was sprinting, and I was diagnosed with Postural Orthostatic Tachycardia Syndrome.

I had been having joint problems for a while.  My joints were painful at times and felt very unstable.  In November, my joint issues reached a peak when my ribs began subluxating (aka partially dislocating) when I hiccuped.  This had happened to my knees before but they had always slid back into place quickly and on their own.  My ribs, on the other hand, stayed out of place because the muscles around them seized up.  Whenever my ribs went out (which was often over the next few months), I was pretty much immobile.  So in January I talked to my rheumatologist about it and turns out he thought that I had already been diagnosed with Ehlers Danlos Syndrome, which I had not been.  So once we cleared that misunderstanding up he actually tested me and diagnosed me with it.  EDS is an illness in which the connective tissue/"glue" that holds the body together doesn't work, leading to unstable joints and, well, unstable everything else.  So in my case we believe that when Lupron destroyed my Autonomic Nervous System and peripheral nerves, it also destroyed my connective tissue.

All of these illnesses are a bummer but it's not like the illnesses themselves are new to me.  I've been dealing with all of these for a very long time and the only new aspect is the validation that there are names to go with my symptoms.

That's all for this update, I'll write a more recent update about my port and everything at another time :)


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