Monday, January 6, 2020

Additional diagnosis - myelitis

Well, I've found out why my balance just kept getting worse, while most of the rest of my symptoms did not seem to be progressing, thanks to regular vigorous exercise.  Part (or all?) of my balance issues seem to be the result of myelitis.  A few years back, I had a nasty lupus flare - think itchy rash all over my body - and ever since, my balance has been slowly deteriorating.

Anyway, my Movement Disorder Specialist sent me for spinal MRIs - which showed some demyelination (loss of the "insulation" on nerves).  And more MRIs, including more current MRIs of the brain.  But no lesions in the brain; just the spinal cord.  While I waited to see even more of a specialist my balance continued to get worse.  I fell again, and started using a rollator outside the house, then another rollator inside the house.

So, lupus myelitis.  Myelitis is already rare, but caused by lupus is even more rare. Also myelitis, often called transverse myelitis, usually presents as sudden partial paralysis.  I had the initiating event - the lupus flare which damaged my spinal cord - without the paralysis (long may that continue).  So the treatments for the initial damage aren't available or appropriate.  What is available now is often used - a chemotherapy drug (rituximab) that suppresses the part of my immune system that has attacked my nervous system.

I've had the first two half-treatments and now wait for the next full treatment in six months. Treatment involves infusions (IV) that take 5-6 hours; I sleep through a lot of these hours.  The chair is a comfy recliner and they give me a blanket and some benadryl; how could I not sleep?

My balance does not seem to be worsening, which is good.  I'm not as stiff, and urinary retention is slowly improving (retention means it's hard to completely empty my bladder when I pee).  Baby steps, but I won't be satisfied until my balance improves and my fine-motor coordination improves, which might take months or years - or never.

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One problem with myelitis (very similar to MS, but in the spine, not the brain) is that vigorous exercise is out and heat/sweating can be a problem.  I had been having a tough time with exercise and with heat.  Either (exercise or heat) was starting to leave me so stiff that I could barely walk, and I was exhausted for the next 24-48 hours.

Cutting back on what has become a habit has been hard.  But if I don't overdo, I'm not as stiff and exhausted.  I'm back at Rock Steady, which is both exercise and support group, but doing the warm ups. balance work, and stretches; when the rest turn to boxing, I continue stretching.  I've tried but punching is out - too vigorous.

I still respond to L-dopa so do I officially have Parkinson's or not?  Which symptoms are from PD and which from TM?  And will I ever know?  Discussing with my Movement Disorder Specialist when I next see her.

Images from Pixabay.

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