mama whose curiosity knows no bounds

Posts tagged ‘mestinon’

Long, winding road – my lupus journey #3

I saw a new doctor, who was a very kind petite woman (whenever possible, I choose woman doctors).

I explained my extreme fatigue, attention deficit, and double vision.

She almost immediately told me, “it might be Myasthenia gravis.  You need to see a neurologist.”

This made me and my husband absolutely freaked out.  We are both biologists, and my husband teaches cell biology.  One of the teaching topic is neurotransmitter, about how one neuron transmit signal to the next neuron.  And classic example is acetylcholine receptor.  Neurons connected are really close but not physically connected (called synapse). When the nerve signal (in a form of electrical current produced by rapid pumping of ions) reaches at the end, it must tell the next neuron that “we got a signal”.  To do that, neurotransmitter is released from the nerve end and it was received by the next neuron’s receptor specific to that particular neurotransmitter.  When immune system recognizes acetylcholine receptor as foreign, it produces antibody against it and binds to it.  Then the next neuron will be unable to receive the signal.  It results in muscles not moving despite brain tells to do so.  In the most severe case, muscles for breathing will be affected and need ventilation.  We knew that much already.

My first thought was, “my hubby will not be able to take care of K and S if I have myasthenia gravis and become disabled.  Honestly I was hardened by the process of accepting K’s autism so I wasn’t devastated about the diagnosis per se.  All I thought was how I could manage stuff.

Anyway, the primary care physician referred me to a neurologist.  It was a private practice and I remember the odd feeling that the waiting room was filled with “Ron Paul for president” brochure and other Ron Paul stuff.  Well, at least I could tell that the doctor was probably a libertarian.  Good.

I explained what happened me, and he asked, “what about seizure?” I asked back, “Seizure?” The doctor said, “yeah, the referral says you might have seizure.  What is the symptom?”

I was bummed.  First I had no idea that the PCP referred me as potential seizure patient.  I think at least she should have told me if she saw any symptom.  I wasn’t aware of any symptoms myself. But then something came to my mind.  I was taking the maximum dose of Wellbutrin and it has potential side effect of seizure.  When I said that, without no self-aware symptoms, the neurologist told me that it is possibly it and I should switch antidepressant (that I had no idea why I was taking).  He did several examination, like looking into my retina, telling me, “you have macular degeneration in your left eye”.  What?  I have to see ophthalmologist, too? (BTW, I did, and turned out to be “myopic degeneration” – overstretching of retina by nearsightedness.)  Then he applied an icepack fresh out of freezer and placed on my eyes until I felt completely numb.  He asked me if my vision is better.  I told him sort of.  It was at least very refreshing and I didn’t see dramatic improvement but my vision was indeed better.

He prescribed Mestinon, it’s an inhibitor of acetylcholine re-uptake and most common medication used for myasthenia gravis.  I filled the Rx at the nearest pharmacy and bought a bottle of water and took it.  Then I headed home, driving.  Within 10 minutes or so, my view became so clear and I became so energetic that I felt like I’m a superman!

But this sounds like the diagnosis is likely correct.  Now I was faced with more tests.

To be continued.




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