I´m so sorry you had a rough time at your appointment some days ago, Celeste.

I´m to the point of frustration where I have two excellent recommendations one for a neurologist and one for a pulmonologist. And in my future plan I have decided on the following -

No more settling for doctors and neuros that are looking for myasthenic weakness where they think it ought to be.

So what about doctors? I can at least tell you how I found mine…...It was by doing some google searches and´pre-screening´on FB believe it or not. A recommendation will only tell you about someone else´s chemistry confined to their own set of health problems with any particular doctor in question. But you´d be amazed at just how much you can translate into proactive material for the good and well being of all parties concerned just by looking at what at first sight appears to be just a whole bunch of irrelevant information

+ =

Good luck,

Anacrusis

hello i am new here and was just diagnosed with in mid september only after being treated by my primary for allergys with a few return visits mostly with watery drooping eyelids and went back after i spent the time on Google doing my own research and deciding i had MG after returning to my primary and saying it wwasnt allergys he then said yes its probably mg and sent me to a neurologist the next morning. went i went the next day the neurologist said yes its MG and that he only had 5 patients in 10 years with MG. I did fprget to say i am here in New York City which probably has the most doctors and specialists per 1000 people then almost any other city. the neurologist put me on mestionon 60mg 3 times a day but within a few days i was in crisis and went to the ER at a local hospital. I was there 20 days and had 9 plasmatherisis treatments and finally felt better. With luck in the hospital i had an attending neurologist who referred me to another doctor in his group who REALLY specialializes in MG. I consider myself to be so luck to had found this doctor. Now a month out i seem to be stabilizing and looking forward to going into a remission state. Every day is brighter for me now.

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.

1. It is unreasonable to expect an ER doctor to diagnose an illness with symptoms you have had for many years. Regarding MG specifically, many ER doctors don't know how to properly manage a patient with a clear diagnosis of MG, let alone make this diagnosis with an atypical course or symptoms.

2. It is quite possible that you do have MG, but the diagnosis of this illness is many times not straight forward and you need a lot of patience. You may possibly need to see more than one neurologist before you will find one who will properly diagnose your illness and more important know how to manage it.


3. I would personally wait for the results of the tests your GP took (if you have AchR antibodies it will make life much easier for you and your physicians).

4. resting is a very good idea. I would try to avoid any exertion and rest as much as possible until this is sorted out. The risk of aspiration can be significantly decreased by: A. swallowing with your chin tucked forwards. B. not eating or drinking when you are having difficulties breathing or talking. C. total rest (not even talking) for at least 30 minutes before each meal. D. eating soft/pureed food. E. thickening your liquids.

5. A referral to a neurologist is also a good idea, and if you are having breathing difficulties a referral to a pulmonologist will also be in place.

(okay, that's frustrating... just lost all my response when I got logged out, having to re-type...)

Alice MD, thanks for the guidance on what to do & how to proceed.

Rest... Check
Wait... Check
Tips for drinking & eating... Check
See Neurologist & possibly Pulmonologist... Check

Working with [cancer] patients, I get it sometimes takes patience & lots of probing to clarify issues & needs. To speed along the process for E.R., I'd prepared a list highlighting symptoms experienced in the last two weeks (not just long-term symptoms)

My expectation was not that the E.R. doctor be a M.G. expert, although I would have accepted that as a happy surprise. I was expecting the doctor to listen to my input & very real symptoms without dismissing me as a hypochondriac. Had I been able to provide the names of tests (ABG, MIP and MEP, oximetry while walking, clinical exam), maybe he would have done more and I would have been taken more seriously. My brain keeps coming up with the phrase 'curiosity of spirit'. I wanted him to have that... a willingness to take the extra step & identify the tests to which I namelessly referred without sending me home with a pat on the head.

The doctors who are part of my regular healthcare team are exceptional in their ability to communicate & work 'with' me rather than 'at' me. I missed that yesterday in a big way at a time when I needed answers (the chest pain had me feeling concerned & out of my element.)

No chest pains so far this morning, by the way. I suspect the symptoms are going the way of our polar ice caps. Although climbing stairs still makes me sound like a perfect candidate for making prank calls.

A lot of what you say, should have been that way. But, unfortunately (for many reasons) it is not.

I recently came across an interesting short lecture about the education system (The bottom line was that it is mostly built around the academic enlightenment and industrialized revolution and creating "mass production" of educated "boxed" people)and I thought a lot of it applied to medicine as well in which curiosity of spirit is mostly supressed.

I too have a wonderful team of physicians and nurses taking care of me (after many years of mostly encountering others...) and a wonderful team of physicians and nurses I work with.

I feel very fortunate for that and don't take it for granted, as I know that those are the exception not the rule. I am trying to be realistic in my expectations and take a pragmatic approach.

I hope my advise has been somewhat helpful and I apologize if I came across as not sympathetic.

Most of us on this forum went round and round before getting diagnosed. First they have to rule out everything else. Good luck on figuring this whole thing out.