I am just so, so, so, so, so frustrated. And so full of despair. I re-read this letter and it seems apparent that so many things are wrong. It's like somebody else went to see this doctor. He keeps talking about how I have been reporting eyelid ptosis. I NEVER have reported eyelid ptosis!!!! My EYEBROW falls down and sometimes so does the rest of that side of my face. I had that clearly typed out on a list of symptoms I brought in. I brought in a series of photographs showing the eybrow droop, the facial weakness. Aaaarrrggghhh! He makes it sound like I'm crazy because he didn't see any evidence of eyelid ptosis. Because there IS NO eyelid ptosis.

Also, he says that the frontalis results are borderline abnormal and never mentions the ocularis results. On the copy of the report I have it says that the frontalis results are abnormal and the ocularis results are borderline. Do you think it's possible that he didn't double check the results of the sfemg report? Or am I just getting way too paranoid?

And then I showed him some videos of calf fasciculations resulting in cramping so bad my calves were split into two sections. I also showed him a video of a sort of quivering my thigh muscles get when I move my leg. He says in the letter that the emg WHICH WAS IN MY THIGH didn't show any evidence of fasciculations. Because I don't have fasciculations there! He seems to have completely forgotten the videos of the calf fasciculations and cramping. So, he blew off my concerns, and seemed to imply that I was making it all up.

This is such a nightmare. I am not heard. No matter how many ways I say what I say. No matter how many ways I document what happens to me. I am not heard. Everything I say is twisted, misunderstood, dismissed.

Ally

Again, I'm sorry.

Eyebrow drooping is eyebrow ptosis. Anything drooping is technically ptosis.

Why don't you write a nice letter and ask him, in bullet points to make it clear and easy, would you please address these points and correct the fact that I never said I had eyelid ptosis? Doctors should be accurate in their assessments.

Don't take it personally. I know it's hard not to. Doctors aren't real good at listening and they do have LOTS to take in with every new patient. Geez, did I just defend them again?

Hang in there.

Annie

Hi Annie,

Thanks for replying.

Yes, you're right - ptosis is drooping of course. Still, eyebrows and eyelids use very different muscles, of course you know that, and I think that's pertinent.

I have written a letter to the doctor, and if I don't get a satisfactory answer I'll be filing a complaint with the board of medicine. This really passes a line to me. The emg report and the letter contradict each other. That's very, very serious. And I wouldn't have know that unless I had gone out of my way to obtain my medical records myself. Also, I think we can both agree that gathering basic facts of the symptoms of a case are the minimum that a patient can expect. I went out of my way to make it those very, very clear using written descriptions, photos and videos. Last, it concerns me that he is ruling out one physical phenomenon by a test done at a different site with different symptoms.

Thanks again,

Ally