[seishin]

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:

-----------
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]

[AnnieB3]

Is there a reason you want to send a letter? Aren't you already getting good care?

There can be problems with sending letters. Believe me, I know. First, it gets put in YOUR electronic medical chart, where any other doctor can see it. It is NOT private! And the comments they make about you after that might not be good.

The typical responses are: "How dare she think she knows what's wrong with her" or "How dare she thinks she knows more than a doctor." Seriously, that happens. Anything given to doctors that "might" be construed as a complaint, tends to get them red flagging a chart and labeling a patient as a troublemaker.

I know, it's sick but true.

You really have to think through things like this, otherwise it might color your care FOREVER. And not in a good way. You think you're being all complimentary but I'll bet it would be sent on to a risk manager. Why? They didn't give you appropriate MG treatment and that left them legally vulnerable.

So if this doctor you saw who wants to be an MG champion is good, just stick with him and trust him. Stirring those medical waters can end badly for you! And you do not need that.

IMO.
Annie

[Anacrusis]

Originally Posted by seishin

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.


She was exceptional as a nurse and as a person.
[Seishin]

Hi Seishin,

You spent a lot of time on this. Don´t think I could have written such a good letter

If the letter is to the great 3rd year neuro then I would have started with a few sentences about why you are writing to him etc

I would have just written ´She was an exceptional nurse´

The above paragraph I can SO relate to. And in addition in my case they spent time poking and prodding and trying to fatigue the wrong muscles! (I never had ptosis facial involvement at time of exam)
I got one single deep knee bend which was on my good day - had it been a week earlier I wouldn´t have been able to get up at all.

I am today finally feeling some effects from cycle test at pulmonologists on Thursday 2 days ago
(but in my case, now, post exertional malaise is no longer strong enough to impact my life in a negative way)

Good Luck - great letter to have in your own journal as well.

Anacrusis

PS...SO glad you are doing better

[Heat Intolerant]

I'd make it shorter, less personal, and add in what you think generally regarding what's wrong with the testing. This isn't perfect, but maybe it's a start.

Dr [b],

Thank you for your outstanding treatment of my dyspnea and weakness on 1/29/13 with (whatever the treatment was).

I research cancer information for patients and counsel them on how to relay medical information to their doctors. For this reason, when I became increasingly symptomatic with breathing difficulty in mid-November 2012, I did research on my own symptoms. Because I have Autoimmune Polyglandular Sydrome Type 3C (vitiligo, Hashimoto's Thyroiditis, chronic hives), MG is on the short list of autoimmune conditions for weakness and difficulty breathing.

In fact, my responses to the MG tests (on Wikipedia) for ptosis and diplopia, and fatigable weakness are remarkably consistent with that disease.


I have not understood why some of my pulmonary & swallow tests have not been conducted by rapid repeated muscle strength tests (instead of just one or instead of tests spaced too far apart) as MG is about weakness on exertion. I also don't understand why I had to advocate so strenuously to receive arterial blood gas or walking oximetry. In addition, I would have expected to be observed for at least a half hour because there is a lag time in my weakness. I also expect my doctors to use for treatment purposes the information I give them on what happens to me at home because I do not want to have to keep going to the ER. 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 to a caregiver.

I finally did get the proper testing (Tensilon) and breathing tests in rapid succession rather than having me rest between efforts (by x in h city; he was outstanding). 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. I felt like my normal self as well for a short time during Tensilon testing. That told me a lot. Had I taken pictures, it would have been nice to see that the ptosis of not just my eyelids but also eyebrows, forehead and nose resolved.

I have a neuro consult with [Dr. H] on Mon, Feb 4. In the meantime, I've miraculously finagled a prescription for home oxygen. With a caregiver's help, I should be fine until Monday. [Dr. H] is the local MG-expert neuro in [the neighboring city].

Thank you so much for treating my disease like all other diseases. I have had a terrible time getting proper care. What I have been learning is that many people with neurological disease are considered to have moral and intellectual flaws and are denied treatment (I was never considered to have these flaws before becoming symptomatic). I was in fact very disappointed that the hospital refused to follow your recommendation because it seemed proper (appropriately matter-of-fact) to me. I don't understand why trialing or using treatment for this particular disease (or using its hallowed name) causes such an uproar. The tests, if when they are properly done at all, (apart perhaps from Tensilon and medication trials) are well-known to lack sensitivity. It is therefore very dangerous for patients when a doctor refuses to treat because of any given negative test result.


I'm cc'ing the hospitalist Dr. [C] because he was interested in following my case. It would be nice also if someone could thank the nurse Elena who cared for me in the Intermediate Care Unit as she was an exceptional nurse.

Thanks so much again for your effort to help me and I hope the hospital appreciates your input for treating other patients like me as it is invaluable.

[Seishin]

[Stellatum]

I think this letter would benefit from a couple of sentences in the very beginning that tell him why you're writing to him. He needs to know why you're telling your story before he begins to read.

Originally Posted by seishin

-----------
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). new paragraph here (and I'd change all the &'s to "and"
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 of 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 [I think "presenting" means "appearing for treatment." You could just say "When I experienced"] 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!)[period here] 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 [achy] 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 of how ptosis can affect not just the eyelids but also the eyebrows, forehead and even the nose.

Having responded [My response] to Mestinon and the Tensilon test certainly give more credence [credibility] 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 felt very much that" or "It felt very much like"] 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 that 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]

[Neurochic]

You might want to think again about sending a letter like this. I don't know what you feel you will gain from it but it could cause you all kinds of problems.

This will form part of your medical records - it won't be a private letter between you and the doctor you rated. I know its absolutely wrong but there is a risk that you will be labelled as a 'hysterical' cyberchondriac. In particular, in this respect, referring to Wikipedia is a mistake - you need to refer to a peer reviewed, research study that has been carried out using proper methodology preferably by an expert in the field and published in a respected journal ( or as good as you can get towards that gold standard).

I don't think for a second that you deserve such labels - I know myself how utterly frustrating it is to have clinicians who couldn't care less, are lazy and are incompetent or ill informed. I eventually had to go abroad to find someone who knew more than me about my condition! It's just that once this kind of label is applied you will really struggle to be taken seriously and to get appropriate treatment - you are more likely to be dismissed in future for this and for other conditions. No doctor ever has to justify this kind of labelling and its nearly impossible to fight it however logical and objective the argument is against the label.

I just urge you to think very hard about whether this is a good idea even though I can understand you want to pass on your praise and thanks to the young doctor.

[alice md]

I definitely wouldn't send this letter.

If you have reasons to thank that resident, just send a very short thank you letter. There is no need to tell him how poorly you have been handled by others.

This letter is mostly criticism, based on data from internet support groups and other non peer-reviewed internet sources.

For instance, you write : it's recommended that suspected seronegative MG patients have tests such as arterial blood gas or walking oximetry.

Recommended by who?

I can understand your frustration.

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.

But, you have to understand that writing such letters will only make you lose more of your credibility.
If they don't think you are ill and are faking your illness, will this letter make them change their mind?
There is a saying- you can't prove that you don't have a sister and that she is not a hooker.
And if you go around screaming- I don't have a sister, so how can she be a hooker, you only raise suspicion that you do have one.

My advise to you (which of course you do not have to follow), that as hard as it is, just put this behind you for now. Be pragmatic, concentrate on finding a physician you can trust and who truly deserves your gratitude.

[AnnieB3]

For instance, you write : it's recommended that suspected seronegative MG patients have tests such as arterial blood gas or walking oximetry.

Recommended by who?

Well, Alice, I guess recommended by me; however, I didn't say it was required, only a "tool" that is often used to evaluate an MG patient in an ER. Now my research was based on experience, doctor's recommendations and a lot of research. But I'm not a doctor, so I don't "recommend" anything. Even as a designer, I can recommend a design but it's up to the customer to choose what they want. Why aren't doctors the same way? It's apparent that they often don't even consider what the patient wants. And if they don't, why not at least explain why (rhetorical question)?

Sorry, Seishin, I digress.

I think it's very sad that we, as patients, have to think this way. But the reality is that neurologists sprint to the psychosomatic card faster than an MG patient can tank during a crisis. If only someone had told me how suspicious they are way back when, I might've saved myself a lot of pain. And, Seishin, by pain I mean a LOT of prejudice, lies and unethical behavior that I never want to see again.

I'm sorry, but you can't change a neurologist's stripes.

[seishin]

Thanks everybody for the detailed & thoughtful feedback. I appreciate the time you spent & your opinions.

I won't send the letter. Just as Annie describes, I've already encountered a large share of unethical behavior with snap judgments about my state of mind while disregarding my state of body.

The resident neuro deserves recognition and I want to apprise him of my situation without sounding whiney or litigious. My naive, magical thinking says his having this feedback potentially could help him become a better neurologist to help more patients. But I don't want to bring any more hellfire raining down on my head in my effort to educate.

I guess if I really want to work at bringing awareness and clarity re: the challenges of diagnosing MG (how it can't necessarily be diagnosed using traditional approaches to neuromuscular & pulmonary testing methods), I would have to do so through a third-party entity. That way, any wrath couldn't be directed back at me.

Do you think it would be out of line if I sent the resident neuro a short letter like this?:

"Dr. [B.], I just wanted to let you know you were spot on with your diagnosis. I've had a positive response to the Tensilon test for myasthenia gravis. The way you spoke and treated me with compassion during the hospital stay was really appreciated and went a long way in making me feel heard. Thanking & wishing you well, Seishin"

[Anacrusis]

Originally Posted by seishin

I won't send the letter.
.................

Do you think it would be out of line if I sent the resident neuro a short letter like this?:

"Dr. [B.], I just wanted to let you know you were spot on with your diagnosis. I've had a positive response to the Tensilon test for myasthenia gravis. The way you spoke and treated me with compassion during the hospital stay was really appreciated and went a long way in making me feel heard. Thanking & wishing you well, Seishin"

Good for you...I already sent mine! ......Lets hope I never get another exacerbation!

I sent something like your short note to my SFEMG practitioner written in a nice card - and was astounded to get a letter back from them!