Originally Posted by AnnieB3

Hi, tk3891. Do you have a less mathematical name? Welcome!

I'm sorry you're going through so much. MG is NOT fun.

You might need some advice on changing the Mestinon dose or frequency. More isn't always better with Mestinon. Some people do better with a more consistent dose, like every 3 hours. A higher dose isn't always better but talk to your neuro about trying 90 mg. later in the day to see if it helps. Don't make changes without that talk though! And some people do well on Mestinon Timespan at night, in order to get a better night's sleep. My MG wakes me up literally every 3 hours. It's beyond annoying, though I do appreciate that the drug exists.

I wonder if you are so bad right now that you might need a higher dose of IVIG or more consistent infusions.

Pred can be very hard to get off of. It can do a lot of damage to the body on a long-term basis too. Sometimes neuros do a "priming" dose of Solu-Medrol (it's IV steroids) when an MGer is worse but it might not be a good idea since you could get worse temporarily. Just a thought.

Due to the cataracts, it might be a good idea to get your vitamin B12 checked. Yeah, it could be "just" the steroids but a deficiency can contribute to that too.

Are you on Calcium/Magnesium/Vitamin D? Have you had your Vitamin D levels checked? B12 and D are common deficiencies.

Don't forget about regular thyroid checks too. Many people with MG have some type of thyroid issue.

I hope you and your neuro find the right treatment balance that works for you. I hope your daughter is doing well. It can be hard having MG and being a Mom but many people with MG find ways to do it well.

Annie

Originally Posted by cait24

Did they do a CT scan of your thymus? They often will remove an enlarged thymus and most people find improvement of symptoms.

kathie