Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Muscles & Bones
/ Myasthenia Gravis Support Group

Frustrated by MDs

CarlyMichelle
CarlyMichelle
I got an SFEMG done recently with one of the best MDs in the country.
She had a hard time getting it done b/c my muscles were not cooperating as she put it. It was excruciating to say the least and I'm a brave lady!
Still, it was for a good cause.

This MD said she'd "edit" the results and let me know.
(but probably it was negative)

As of a month later, I have received NO communication about my SFEMG or from this top teaching hospital's neuro. When I called to get information, I was told to make an appt. if the condition worsened. What!??

I emailed the main neuro (not SFEMG person) today in hopes of getting a response. I am SO frustrated!!

I got an appt. for MAY!
Grr.

Carly
joefnh
joefnh
Carly where did you have the testing done? Mine was at Mass General in October and I finally got the results (positive) just a couple of weeks ago

Joe
deleted_user
deleted_user
Ugh, I understand this. See if anyone else has a similar story

Ophthalmologist, refers to Neurologist.
Additional eye symptoms, Neurologist refers to Ophthalmologist. Ophthalmologist refers me back to the Neurologist saying it's nothing eye related, has to be MG. Neurologist to PCP saying it's not MG. PCP does some tests, refers me back to Neurologist. See another GP to see if anyone wants to think outside the box, three weeks later, still hasn't even responded to the follow up he promised regardless of a half dozen voicemails to his MA.

And I get to pay these fools out of pocket a hundred bucks each time they bounce me around.

Ugh.
bweeds
bweeds
Thanks to HIPAA, in the US, we do not have to wait on doctors to interpret test results that have been run and reported, you only have to sign a release of information to yourself. When having studies done, ask for copies; for radiologic and other raw data reports, ask for the disks, the written report may not be available right away. Anything done can be requested from medical records, although you may be charged a copying fee, but if immediately requested, it is usually waived. Be sure and save at least one copy of the HIPAA form and patient rights you are asked to sign. In a time of fragmented care, it is important to have your records available for all your health care providers and we will be the only ones we can depend upon. Do not feel self conscious asking for your own records (available to almost anyone at your insurance company). Although we may not be able to interpret the results and consultation reports, etc., we may have more than one doctor able to do so and some may be better than others! b.