Inside a Doctor Visit

Hi, Denise.

Hi, Dr. Small.

Fancy meeting you here.

I know. It's good to see you. I've lived a very, very normal life with this. And I'll tell you that I was without medicine for 25 years. And then, it reappeared. So I guess the disease can take a course like that?

The disease can take a course like that. But the research has found that within the first one to two years of diagnosis, we really know how well one is going to do. It is extremely unlikely you would have a terrible time with a recurrence of it. Although it may sound very severe, it's a very easily managed disease 80% to 90% of the time.

And anyone who suffers from myasthenia gravis, however mild it is, should be monitored, in particular with the eye muscle weakness or the eyelid weakness that occurs. It's important that any individual, in the beginning, gets some form of brain scan to make sure they don't have a benign growth, or a non-benign growth, or have some out patching of a blood vessel.

What are some of the new advancements for the patients?

Sure. There's a intravenous substance for the use of people with generalized myasthenia gravis, that is myasthenia gravis that's not just affecting the eyes and the face, but in people who have trouble arising from a seated position or breathing and so forth.

But in lieu of that, there's actually a cancer chemotherapy. Although it's not FDA approved, it's something that can be very useful for patients with generalized myasthenia gravis.

As this evolves, should we be having a conversation about this and what path I should take?

It's unlikely, given the fact you've had myasthenia for 30 years or more. I think in your case, I'm crossing my fingers that won't be necessary.

What other vaccinations should I have at this point in time, just to be sure that I am safe?

In general, the rule is, if the vaccine that you're getting, be it for COVID or anything else, or the flu, if it's not a live virus you're getting, then it's OK to get and is tremendously suggested.

DENISE BEVERINA-MOORE: Any other advice just on the quality of life every day?

I think the most important thing one can do, just generically, is stay out of the heat. If you happen to be on medicine for myasthenia gravis, don't forget it. Any type of light aerobic exercise or anything that you're used to doing, feel free to do.

Do you feel like the patient should be advocating for themselves whenever they go over to the doctor, maybe asking for a second opinion?

There's nothing wrong with asking questions. Since it is an uncommon disease, it's important that an individual who has double vision, who has weakness, who has trouble swallowing, if they're coming up against a wall with their physician, that they certainly seek out a physician or a health care provider who's sensitive to them and listens.

What are the trends, the approval, for medicines moving forward for the myasthenia gravis?

There's never been a better time in the research world for people with myasthenia gravis and the drug development of other medications specific for preventing the antibodies from affecting people. And if those drugs get approved, as they likely will, we can personalize medicine for people with myasthenia gravis.

If a person happens to have myasthenia gravis, please consider being part of a clinical trial. Any type of participation by patients with this relatively rare disease is desired, otherwise we can't get good data to get even better medicines out.

And if it wasn't for the research, we wouldn't be where we are.

Absolutely.

And I think if I had advice to give to other patients it is that the patient doesn't let the disease control them. We need to be sure that we are living our life to the fullest.

I couldn't agree more. And I enjoy treating patients with myasthenia gravis, in part because it's a very manageable condition.