Originally Posted by AnnieB3

Has anyone figured out why you have a "fatty" liver?

Do you drink a lot of alcohol? Do you have high blood pressure? What are your cholesterol levels?

As far as the bone thinning, you need to see an endocrinologist.

Are you a cola drinker? The phosphorus in those drinks sucks the calcium right out of the bones. Or you could have a parathyroid condition or something else going on.

Either of those two things "might" be able to be counteracted by diet and supplements. BUT you need to see specialists (not a neurologist) to determine what the causes are.

It's possible that you might be able to recover either of those two issues.

IVIG—correct me if I'm wrong, guys—is cleared by the kidneys. It should have no effect on those conditions!

There is also Hizentra, or SubQ IVIG. If you don't have a problem with needles, that could be an option. It's injected into the lower abdomen.

There's a lot of paperwork involved in providing a patient with IVIG. Many neurologists won't do it as an ongoing treatment. One, it's very expensive. Two, again, paperwork. And the insurance companies are mainly to blame for this. They have determined certain conditions that make routine/chronic IVIG use okay. IVIG has been labeled for use in MG only in acute situations, such as a MG crisis.

So see a couple more doctors and figure out WHY you have those conditions and what might be done about them.

Don't give up! I honestly don't think that neuro could simply say, "No" without suggesting that you determine cause of the conditions and if there are treatments for them! While I understand the concerns, that's not thorough doctoring, in my opinion.

And a higher dose of Mestinon isn't necessarily what will work for you. Many people take it more often throughout the day at first. I personally do better on a consistent dose. I am at 90 - 100 mg. every three hours (sometimes sooner) around the clock. HOWEVER, don't change your schedule without speaking to a neuro about it.

Take it easy, okay? I'm really sorry that you didn't have better news. I do okay on only Mestinon, but I don't work (can't) and my life is pretty substandard.

Annie