I don't know what to say, JJ.

It might not be MG, but it might be. A clinical exam is not sufficient to know for sure. Yeah, it can be revealing and MG is a clinical diagnosis backed up with tests, but there are patients who don't have obvious signs. If it was so obvious, how could my multitude of doctors have missed my MG for 41 years?!!!

All I can say is what I would do. I would make another appointment with the same neuro (possibly). I would bring someone else with me who knew me and my symptoms. I would write down exactly what has been happening, to not only document symptoms, but to have a paper trail of what I gave the doctor. I would not be argumentative, yet I would be firm about the fact that something is going on that is making a serious impact on my life. I would ask for the MuSK test. I would ask them to consider LEMS and CMS.

I would seek out a second opinion from someone such as an endocrinologist, since some hormone problems can cause weakness.

Have you seen a neuro-ophthalmologist?

I really don't know what else to say. I find these types of situations beyond frustrating. The patient ends up being a ping-pong ball, going from doctor to doctor, with not one of them thinking thoroughly about the situation. After which the patient is so beat up that they want to give up.

Take a step back, write some things down, and then plan what you'll do next. You can't give up on your search for help if you truly believe there is a health problem!!!


Annie

Kathie, thanks, yes he was at a University medical centre, and works for the MG specialist team. He pointed out several times that He was the expert.

Annie, I decided to take the advice of the expert at face value and went straight back to my GP. Whilst I still do not have a diagnosis, she has agreed to put me on Mestinon for a 2 week trail period.

Oh and yes I did see a neuro-ophthalmologist, at a teaching hospital... she diagnosed Blepharospasm and suggested that I should have Botox treatment.

Mestinon.... works... 30 mg gets me back to a normal level of energy and activity.

It also appears to be improving my Blepharospasm (excessive blinking). Hopefully that will over time improve my double vision.

I missed that post of yours saying that you were given a Mestinon trial! That's great.

Mestinon doesn't do much for double vision. Sure, for maybe 2 hours it gets better. But then if you do too much computer work or drive or whatever stresses those eye muscles out more, the DV comes roaring back even on Mestinon.

At least it's helping! Will they give you more than a trial now?

Annie

Finally, after a failed SFEMG, the MG Specialist, phoned me to tell me that I had no neurological problems and to go back to my GP.

For good measure he added that he didn't need to do any blood tests as he could see that I did not have MG. He has seen hundreds of MG patients and can tell in a single consult, with no tests.

When I pointed out that Blepharospasm was neurological, he stated that the Neuro-ophthalmologist was clearly wrong because HE could see no signs of it.

As to why Mestinon had produced such a remarkable improvement, well according to him anyone would improve on Mestinon, and Placebo effects were common.

Unless I can get his boss to respond to my emails or letters, I have no other options. Anyone any suggestions?

You know why he said that, right? Whenever they see any kind of emotional (or what they might think is hysterical) reaction to something that other patients are fine with, they think the patient has psychological issues ONLY.

And once they plant those stubborn feet into the ground, they don't normally budge. Not only that, but they will belittle any other evidence another doctor has found. Sucks, but true.

You should've offered up some Mestinon to the doctor.

It is NOT benign or anyone could buy it at a store. And any "placebo" effect would be accompanied by all of the cholinergic overdose symptoms, aka SLUDGE syndrome.

http://en.wikipedia.org/wiki/SLUDGE_syndrome

Say the patient is fine.
Laugh at the patient.
Underestimate the severity of symptoms.
Don't do anything; it's legally safer that way.
Give the patient false hope and then snatch the medication away.
Exit quickly and pass the buck to another doctor.

I have no idea what you should do next. Only you can decide that with your primary doctor. If you go the "boss" route, you'll just be red flagged or blacklisted. Use as much "sugar" as you can to get someone to help you!

I'm really sorry you're left without a solid answer. No patient should be left in that situation!!!


Annie

I'm so sorry, JJ.

How discouraging-- I am really sorry this is happening to you JJ!

Annie I love that... can I use it elsewhere.

Why not? It's been used on thousands of patients.

It's not really funny, though, is it?! Enough of this substandard care.