[AnnieB3]

Hi. Welcome to the forum. I noticed your postings in another thread and wanted to respond to some of what you said there. What would you like us to call you?

But I am extremely tired a lot, and I am also having dogestove difficulties.

I think you should go see your primary doctor, if you have one, and get checked for some basic things such as thyroid function and vitamin B12 and vitamin D. When you have MG, you can't really assume that every symptom is from that. A Vitamin B12 deficiency, which I had in 1997-99, makes a person really tired - all day - and it is very bad for the body. Not all doctors think to test for it if someone is tired.

I was an undiagnosed amblyopic for 60 years, so am just back to ground zero.

Have you tried to get in to see a neuro-ophthalmologist? They would be the best doctor to go to. I was diagnosed at age 10 with amblyopia/lazy eye, which was not lazy eye since that is permanent if not treated by then. It was ptosis from MG. My eyelids go up and down hourly. That's what happens with MG ptosis (toe-sis). The muscles around the eye get weaker with use and then they weaken and droop. Do yours fluctuate like that?

I do not know if mestinon is cause of gastric problem or it is a result of PP-I I was left on for 4 years.

A lot of older people actually have a LACK of or zero stomach acid, not too much. I hate how doctors don't diagnose that properly. The symptoms of too much and not enough stomach acid can be very similar. And the fact that you were on a protein pump inhibitor for four years is very disturbing. A lack of stomach acid causes a deficiency of a lot of vitamins like B12 and calcium and can cause iron deficiency and a low albumin. I would ask your doctor to check a comprehensive metabolic panel!!! And a complete blood count with ferritin. And, frankly, you probably need to be tested for celiac disease!

You may want to try the Mestinon syrup (the brand name from Valeant and NOT a generic). If you have drug coverage with your health insurance. I don't have stomach acid and the syrup gets absorbed more quickly. This may sound gross but do you ever see tablets come out unchanged out the "other" end? That shows a lack of stomach acid. Mestinon syrup can be titrated so that you can start with a really small dose, like 10 mg., and move up slowly from there.

Am trying herbal stuff for gastric and am thinking of heading back to half-tab doses, but after reading here wonder if a night-time half-tab should be added.

Be careful with any herbal supplements! What are you taking? There are some foods and drugs which can make MG worse. Don't change your Mestinon dosing without the permission of the prescribing doctor. Too much Mestinon can lead to being too weak and can cause an MG crisis. An MG crisis is where you get very weak, can't move or breathe or swallow well and need to be in a hospital. And in case that doctor didn't say this, you can't start and stop Pred. Pred comes with a LOT of side effects, not the least of which is the ability to shut off your adrenal glands. Why would the glands work when Pred is doing their job for them? So please don't mess with that drug.

You obviously need a neurologist who does give a damn.

Anyone know of a neuro in his area? Is it South Carolina?

I'm sorry you aren't getting the care you need. Because of your age, doctors often do very little to help. I find that to be utterly unethical and cruel. You need a good neurologist and a primary doctor to follow your care. MG can be managed well but it takes a savvy doctor to do that. As Mike/Pingpongman said, immunotherapy like steroids in the elderly is dangerous. The risk for infection is high. And you know that pneumonia is a leading cause of death for the elderly.

If we can help in any way, please start a new post or add to this one. You need some good care and probably have more questions. I hope you find a good doctor and soon!

Annie