The MG Manual mentioned that a Myasthenia Gravis diagnosis "is frequently delayed months or even years. The unusual distribution and fluctuating symptoms often suggests psychiatric disease."


Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 14

It seems to me that the false psychiatric diagnosis would fall most heavily on those who are insistent with their doctors that there is a problem. If you complain too much, and if you doctor cannot see the symptoms, then you must be crazy.

-Mark-

I think about this a lot. I am seronegative (X3, and negative for MuSK and LEMS). My first two SFEMG's weren't conclusive. On top of that, I have no response to Mestinon, my eyes aren't affected, and my early symptoms were very atypical: the weakness was mainly in my sides, so I swayed back and forth severely when I walked. The Boston MG specialist said, "I've seen about 300 patients with MG, and none of them walk like you."

Like those of most people with MG, my symptoms come and go. Most of the time my strength seemed normal when the doctors did their various tests (having me push on their hands, etc.). They had to rely on my description of what I was like when I was weak.

I sure seemed like a good candidate for a "conversion disorder" diagnosis! To top it all off, I'm female. So, what made the difference? Why did none of the neurologists I saw (five or six of them) suggest that it might be psychological? Did I somehow make a good impression on the doctors? Is there a sort of personality that doctors don't trust that I don't have? Or did I just happen to get really good neurologists? It's a mystery to me.

When I read stories like the one just posted here (Mycha's story), I feel devastated. She has blood tests to prove she has MG, and it's well known that anesthesia can provoke a crisis. I don't understand how this could happen. I don't understand why it didn't happen to me. I'm so sorry for this poor girl, who has been through so much. When I was waiting for a diagnosis (it took 15 months) my biggest fear wasn't that I had ALS; it was that I would be dismissed as a head case.

Abby

Sometimes when questioning my doctor's therapeutic choices, I half expect him to reply: Who's the Barber Here?

Theodoric of York Medieval Barber

-Mark-

My daughter is seropositive and STILL being dismissed as "psyciatric" even though she is also essentially paralyzed right now. IF you or someone you know is seropositive and still ignored, HOW did you overcome that and eventually get appropriate diagnosis/treatment and where did you have to go to get it?

Thanks,
Mina

You go to a different doctor. I had the best luck with an older, more experienced neurologist. The young ones don't believe in MG.

This happens so often!
I am female and was young. So I got a bunch of diagnoses even without ever seeing a psychologist or psychiatrist. I didn't even got any tests.
-depression
-eating disorder
-hypochondria
-conversion disorder
-burn out
The hypochondria I got over the phone, how professional is that eh?

Depression was because: "weak handshake, speeks unclearly and lack of power. Has no expression left on her face"
Eating disorder because I lost a lot of weight because I couldn't chew and choked all the time.

It was a real fight, because when I finally saw a specialist, he did not do a thing and referred me to the psychiatrist because of the "diagnoses" on the letter. I did not go.
So, it wasn't until I couldn't do a thing, like breathing, I was admitted (and not at psych ward as dear old GP suggested), and finally saw a neurologist. Blood was drawn, tested for a whole bunch of things...and lots came back positive.

yeah when MD doctor admitted me to hospital. The neuro told me that he thought that it was mg and it is sometimes hard to diagnose and then he said or it can be in my head. Even though my words were slurring and I was getting frustrated because could not get words to come out.

I can identify with this. I was often unable to get the words to come out. It made it difficult communicating with passengers and with the dispatcher.

-Mark-

My heart goes out to anyone who has suffered because a Doctor did not believe what the patient was telling them.

The ridiculous part is that it is scientifically impossible for any Doctor/person to have a better understanding of what another human is *physically* feeling. And if a Doctor claims to, then I believe that is called psychosis :-p lol

This is why I research everything I want to discuss with my Neurologist *before* our appointment.

I am so past trusting someone just because the have a medical degree.

They have to earn my trust just like anyone else; by listening to what I am saying and by taking me seriously.

I still struggle with this - I saw my first Neuro about 10 years ago when this started and was diagnosed with "Chronic Fatigue Syndrome with Psychological Issues" my illness thankfully became more mild and I spent years beating myself up for being "weak" and that it was all in my head and what I had put my family through etc etc. From then on whenever I felt weak/ill I would get angry with myself and convinced myself that I had anxiety. I spent years researching anxiety and trying everything to get rid of it....I could never understand why nothing worked...until my symptoms flared up again badly a year ago! I then found that my "Anxiety" was always bad when I felt ill/weak....yet, on better/stronger days I was fine!

I saw the same Neuro again last year when things flared up again but this time my diagnosis (for the same symptoms) was "Functional Disorder virally triggered not stress related" ?!?! My GP said there was no way my dramatic facial droop was imagined and she referred me to an MG specialist and was diagnosed, this wonderful Doctor never once questioned my or implied it was in my head and immediately said I have MG.

BUT.....Even now I am diagnosed I struggle and still revert back to being angry and doubting myself over my illness, I am currently having a bad flare up and finally had to take time off work and I am beating myself up and berating myself for not snapping out of it and getting back to work (I have just written a post about my current symptoms and doubts if you are wondering about them) I am seronegative with an unremarkable EMG but my Neuro said my clinical presentation, ice pack test, initial response to mestinon all secure the diagnosis and even a negative SFEMG wouldn't change it as the tests are not perfect.....I think I need the positive test to validate my diagnosis more than he does!!!!!!

How can one Doctor make such an impact on me and affect my life so much?? That same Doctor who later changed his diagnosis?? And yet, I have a lovely Doctor now who has never once doubted or questioned me and I am constantly in fear that he will change his mind and dismiss me because of the first Doctor! When I see him I feel reassured for a few days but then, the years of that old, negative mindset creep back in and and I doubt myself all over again!! I hope the day comes where I can control my symptoms and prove to myself that I can trust my body....and above all I hope the day comes that I can stop doubting myself! x