trying to get diagnosis in the face of dismissiveness
I learned about Myasthenia three days ago when researching the potential cause of aspirating food, fluids & saliva seven times in two weeks. Reading about MG, suddenly a laundry list of symptoms & episodes made sense. To me, anyway,... This morning's GP hadn't heard of myasthenia & didn't know what to do when I confronted him with stories of aspiration, a broken voice & chest pain. He did a chest x-ray & took my temp & blood pressure & sent me in for blood tests with the acetylcholine test taking 7-10 days to get back the results. Then he sent me home. I requested a referral to a neurologist but it's amazing how many medical facilities & doctors aren't accessible on Black Friday weekend. I ended up calling Blue Cross' nurse hotline who said I needed to go to the E.R. (the first time in my life) where I could be seen by a neurologist as needed.
The E.R. doctor was horrendous. I told him of the chest pain & aspiration, let him know I had Hashimoto's Syndrome & pernicious anemia, both commonly associated with Myasthenia, & showed him the laundry list of symptoms & told him about my concern re: myasthenic crisis. The laundry list:
fluctuating ptosis (droopy eye) -- 41+ years
difficulty breathing /severe shortness of breath when exercising -- 19-20+ years
racing heart, extremely elevated heart rate when exercising (routinely over 200 bpm) -- 19-20+ years
(Note: I was diagnosed with ‘Exercise-Induced Bronchospasms not associated with Asthma’ Aug 2011)
memory loss -- many years
muscle spasm/tightness in leg that won't release or relax no matter how the hell I try -- 3-4 years
severe lower back pain -- 3-4 years
sleep apnea (suspected) -- 1 year or less
increased sensitivity to noise -- 3-4 months?
fasciculations on monitor during cervical decompression therapy (the machine's actuator tension creates defensive contractions 30 milliseconds ahead of the body. Whereas a typical bodily response is for the line to become steadier with relaxation, mine became extremely erratic the more I relaxed. My theory is that it's connected to MG -- June-July 2012)
pitting edema in legs & face -- first noticed after a workout 2 mths ago
I'll interject that around this time (Oct 2012), I started regularly using a purchased Whole Body Vibration Machine with the intent of lessening the built up pitting edema & ongoing inflammation throughout my body. The machine is also advertised as helping to 'tone' muscles. My theory is that it fatigued my muscles & triggered a cascade of first-time symptoms:
bruxism (teeth grinding) - broke off a crown, loosened a tooth & 2 other crowns (have since started using a mouthguard) -- Oct 2012
choking -- most recently during last 2 weeks
imbalance -- during last 2 weeks
round-the-clock urinary incontinence -- during last 2 weeks (lovely)
worsening of shortness of breath -- during last 2 weeks
hearing worsened -- noticed it during last 2 weeks
blurry vision -- noticed 1-2 times during last 2 weeks
aspirated food, saliva & liquids 7 times -- during last 2 weeks
arm fatigue (on phone) -- noticed 1 week ago
substernal chest pain -- since Nov 21 or 22
excess saliva & drooling -- noticed Nov 21 or 22
The E.R. doctor's response to my list? "I don't think you have it, you don't look like you have myasthenia. I think you've spent way too much time online."
I... blew... a... gasket....
I told him he must be an amaaazing doctor to be able to look at patients and tell automatically what's wrong without doing tests. I told him MG is called the Snowflake Syndrome because it manifests in different ways & doesn't present with similar symptoms for everyone. (By the way, I had a droopy eye at the time of the conversation.) I asked if he'd actually treated anybody with myasthenia because he sounded pretty ignorant, and that the machines he had me hooked up to aren't helpful in detecting MG. I told him I wanted him to do tests but I wouldn't want to be treated by him since he was so dismissive & disrespectful, and I asked to see a neurologist. (Of note, in his own attempted defense, he said he'd told me I "didn't appear to have myasthenia" because he was trying to "comfort" me, and "most people like to be comforted". I told him I preferred answers over being coddled with potential misinformation.)
Unfortunately, since today was Black Friday, there were no neurologists on call at that location. He did another chest x-ray (wow, imagine,.. it's still fine since this morning's x-ray) & drew blood for another acetylcholine test. I only learned after returning home that he could have/should have done these tests: arterial blood gas (ABG), MIP and MEP breathing tests, oximetry while walking, clinical exam. Instead, I got a $150 bill and my walking papers.
I still have chest pain, I'm resting, and I'll be calling around for referral to a neurologist on Monday. My top criteria: the neurologist has to be one who's able to listen & communicate & who's familiar with MG. (okay, and who can see me right away).
Anyway, thanks for reading. Today was an all-around waste of time, my energy, money & patience. ugh.... B to the O to the O.