Anyone up for proofreading? I'm going to e-mail the 3rd year resident neurologist who determined I had MG & wanted to begin my treatment. Unfortunately, his neurologist boss did an incorrect form of muscle fatigability, so IVIG was denied & I was discharged from the hospital. I think the neuro resident showed tremendous promise due to his level of compassion, and I'd like to encourage him to learn a bit more about recognizing & diagnosing MG. If you're willing, please look over this e-mail draft & advise for changes. Since most of you have dealt with the challenges of MG far longer than myself, there's a good chance you'll have insight or information that you feel would benefit a young neurologist:

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Dr [B],

I'm the patient who came to [your hospital] 01/29/13 complaining of dyspnea & muscle weakness caused by tentatively diagnosed seronegative myasthenia gravis (MG).
I'm writing having encountered firsthand how challenging it is for members of the medical community to recognize the symptoms of & accurately perform testing for seronegative MG. In spite of MG's reputation as 'the most understood of all autoimmune diseases', lack of MG patient exposure contributes to a dearth of true understanding further complicated by the scattershot sampling of symptoms randomly presenting with each patient.

A well-known MG expert at a MGFA conference said it takes men an average one year to be diagnosed with MG but an average of seven years for women. My story is embarrassingly easy in comparison. In real life, I research cancer information for patients & ironically counsel them on how to relay medical information to their doctors. When presenting with an onslaught of symptoms leading into mid-November 2012, I turned research onto myself & was able to come to the realization myasthenia gravis was behind my health issues. This was easier to conclude based on having stumbled on the label Autoimmune Polyglandular Sydrome Type 3C linking my diseases (vitiligo, Hashimoto's Thyroiditis, chronic hives) which puts MG on a short list of autoimmune conditions to be considered when presenting with unexplained symptoms. So when I encountered bull-headed doctors who said there was nothing wrong with me or that I was overly anxious or hyperventilating or being a cyberchondriac, I didn't back down despite the chronic negligence & dismissiveness being encountered. Typically, I would go home & cry and wonder how I slipped from being a so-called professional worthy of respect to being viewed & labeled as a hypochondriac and liar. The emotional abuse & neglect have, in some ways, been harder to deal with than the incapacitating symptoms.

An issue I've encountered frequently is speaking with doctors who realize MG causes muscle fatigue but who lack the training to conduct tests correctly or order accurate tests for an assessment. Given the proclivity for conducting pulmonary & swallow tests without the MG patient in mind (i.e. not enhancing muscle duress to stimulate fatigue to manifest the muscle failure) it's recommended that suspected seronegative MG patients have tests such as arterial blood gas or walking oximetry. With regard to muscle testing for fatigability, overwhelmingly, doctors check overall muscle strength. I'm of average strength so I usually pass. Rarely, doctors will conduct what I call the 'Blue Ball Muscle Fatigability Test'. That's where muscles are stimulated to set the fatigue into motion but not stimulated long enough to have the fatigue effect witnessed during the five-minute consult with the doctor. As is typical with blue ball testing in my case, weakness & achy pain kick in about 30-minutes after the 'fatigability test' is concluded. The true effect of blue ball testing is felt 1-2 days after tests have been conducted. In this go-around, I did the abbreviated muscle test (lasting 5-minutes rather than 30-minutes (SEE BELOW)) & one lap walking stairs slowly on Jan 30. I began feeling the delayed fatiguing effect right around the time of discharge Jan 31 in the a.m when my limbs became sandbag heavy and oxygen needed to be increased to 4 liters for relief.

By the time I got to my caregiver's home after discharge, I was without home oxygen & unable to climb stairs (it took 10 minutes to climb 13 stairs & the effort had me beyond gasping for air. By the time we decided to go to the E.R. again, I was unable to speak or move and communicated by typing with one finger. Here's the message I typed to my caregiver. [Brackets] indicate post-editing for anonymity:

UNFORTUNATELY, I THINK WE SHOULD GO TO HOSPITAL. WE TELL AMBULANCE DR [H] IS DR, GO TO [CITY]. [YOUR HOSPITAL] MIGHT GIVE XMENT TOO QUICKLY WHICH IS HARMFUL TO PATIENT. EVEN IF [H] ISN'T THERE. OTHER MEICAL STAFF HAVE SEEN MANY MG PATIENTS.
TELL AMBULANCE BREATHING IS BEING COMPROMISED.

It was a very fortunate decision to go to [the other hospital in neighboring city] because the E.R. doctor has some years experience with MG & felt comfortable conducting the Tensilon Test (finally! I've been begging for this!) They measured myasthenic respiratory performance correctly by having me do the exhalations in rapid succession rather than having me rest between efforts. Using a Peak Flow Meter, my pre-Tensilon rapidly repeated meter readings were 700 lpm down to 380 lpm in all three pairings. Post-Tensilon readings registered 700 lpm all six times despite rapid succession. During Tensilon, my former 'self' returned for a few minutes without achey pain, extreme fatigue, loss of muscular function, lightheadedness, mental haze or chest pain. If you ever get to witness Tensilon testing, take photos so you can make note how ptosis can affect not just the eyelids but also the eyebrows, forehead and even the nose.

Having responded to Mestinon and the Tensilon test certainly give more credence to my cries for assistance these past 2 1/2 months. I shouldn't have too much longer to wait for a hopefully 'official' diagnosis since a neuro consult with [Dr. H] is on Mon, Feb 4. In the meantime, I've miraculously finagled a prescription for home oxygen despite the notorious deception of near-perfect resting oximetry results (suspected MG patients should be asked to do walking oximetry without oxygen). With a caregiver's help, I should be fine until Monday. [Dr. H] is the local MG-expert neuro in [the neighboring city]. This guy apparently is a rock star with MGers who flock to him from Central Texas and surrounding states (which creates quite the work backlog thus severely delaying initial consultations).

Dr. [B.], you're worthy of recognition for how compassionately you handled my case. It felt very much that I would be cared for & helped after a long road of being denied medical care despite consulting with nine doctors (including two neurologists) and rushing to four E.R.s prior to arriving at [your hospital]. Although my stay at [your hospital] ultimately didn't end exactly the way I had hoped (with IVIG treatment), I can't fault you on the lack of treatment since I believe the decision was taken out of your hands. In any case, you'll soon be a full-fledged neurologist of import & weight. When that happens, I hope you'll have refined your MG practical knowledge to such a degree MG patients will flock to you the way we flock to Dr. [H]. A doctor who treats patients with respect & compassion while having the knowledge to diagnose & treat the disease has a welcome place in the MG community.

Additional Info:

Here's an outline of the Muscle Fatigability test as found on Wikipedia. A thorough investigation includes:
1. looking upward and sidewards for 30 seconds: ptosis and diplopia
2. looking at the feet while lying on the back for 60 seconds
3. keeping the arms stretched forward for 60 seconds
4. 10 deep knee bends
5. walking 30 steps on both the toes and the heels
6. five situps, lying down and sitting up completely
7. "Peek sign": after complete initial apposition of the lid margins, they quickly (within 30 seconds) start to separate and the sclera starts to show.
(Keep in mind, symptoms vary from person to person earning myasthenia gravis the nickname The Snowflake Disease)

I'm cc'ing the hospitalist Dr. [C] because he was interested in following my case. I hope Dr [C] will forward this e-mail through proper channels to recognize Dr. [B] without stepping on toes. It would be nice also to recognize the nurse Elena who cared for me in the Intermediate Care Unit. She was exceptional as a nurse and as a person.

Thanks so much for your effort to help me.
[Seishin]