Hi Annie,

The local doctor sent the blood tests to the MG specialist last week. We are taking my mom to her appointment with the specialist later this week. I was up to see my mom this weekend and she is weaker than I've seen her in my three trips up there since her diagnosis 5 weeks ago. We called the local doctor on Friday to ask about her getting weaker and he switched the drugs from Mestinon to Prednisone. Still no change with her weakness and weak neck, but her droopy eye came back. So we called again and today he added the Mestinon back - 1/2 pill four times a day. The re-adding of the Mestinon cleared her droopy eye right up. Are there any reliable statistics on how long a drug will take to work if it's going to work or is it simply different for everyone?

Hoping to get solid treatment advice/plan this week from the specialist. It's so hard to watch her getting worse and not being able to help; I keep reading that things get worse before better in the beginning. She just sits most of the day. Thanks again for your help, I really appreciate it during this difficult time.

Rob

No offense, but this guy has no idea what he's doing.

When MG gets worse, Mestinon shouldn't be taken away! Mestinon is a helper drug. It blocks acetylcholinesterase (AChE, an enzyme) to keep it from cleaning up acetylcholine (the neurotransmitter that people with MG don't get enough of due to a destruction of the muscle receptors). Acetylcholine (ACh) can then stay in the neuromuscular junction (NMJ) longer and we can use it longer.

Mestinon does nothing for the underlying autoimmune antibody attack.

Without knowing for sure that she has MG, giving someone Prednisone is a risk. And how much did this doctor think that an older woman should have? Dosing should not be high for the young or elderly. Even a couple of mg. might be enough (for a maintenance dose). OR she could've have gotten IV Solu-Medrol (steroids) in the hospital (loading dose) and been weaned down within a month afterwards with a fast taper, thus saving her adrenals.

If your Mom is so weak that she can only sit, she needs to be in a hospital. How is her breathing? Can she eat food or drink water? Can she lift her arms up in front of her? If so, for how long? If not, again, she needs to be in a hospital (where there are doctors who know MG).

PM me if you need to talk about your mom's location, hospitals, doctors, etc., if you aren't willing to share it here.

I'm not a doctor, but what I'm telling you is pretty basic.

What I would have asked the doctor is, "Do you want my Mom to end up with diabetes, thinning or fragile bones, an increased risk of infection (knowing that the elderly often die of pneumonia, especially if they have MG and can't breathe in or out well), an increased risk of cancer, etc. etc. etc.!!!

Did the doctor say to make sure she is taking daily calcium and vitamin D while on Pred? And to take flax or fish oil, or some other good omega 3, while on the anti-prostaglandin Prednisone? Did they check her D and B12?!

What she's getting is "throw a drug at it" doctoring.

MG patients can become weaker at the beginning of taking Pred as well.

My gut instinct is that she needs to be in a hospital, with oxygen and observation (at least). Has anyone checked her O2?

Rob, I know this is overwhelming. I really get it. But this stuff is super important, especially when just being diagnosed (if she really does have MG). What if she has LEMS? Some people with an AChR positive modulating antibody-only actually have LEMS, which has slightly different treatments.

You have the right to see those test results! Who cares if they sent it to the doctor?! They should fax or mail it to one of her children as well.

You could call the doctor she's seeing later this week for his/her opinion.

Ask any patient with MG or lupus or arthritis or whatever AI what taking Prednisone means, and they will give you a two hour lecture on it. Yes, it can really help. Yes, I have had it before and it did. But LONG TERM Pred use is to be taken very seriously. Instead of one problem, the patient ends up with two or more!

They don't often like to do plasmapheresis with older people. But IVIG is still an option. Or some other immunosuppression, rather than steroids.

BTW, it's okay that she sits most of the day. She HAS TO. Imagine a car running on only a teaspoon of gas per day. That's about how much "muscle gas" we have (a little exaggerated) to do what we need to do during the day. And we become weaker as the day goes on. It's not only how much muscle gas we have (supply), but how much of it we need to use (demand).

Naps are important, especially for newbies. I've had MG my entire life and I still take naps! It rests the muscles and improves strength.

She should not hesitate to dial 911 if she can't move, breathe, OR swallow. Those are all emergencies with MG. And MG can tank very quickly. There is no way to tell how quickly or how bad it will become. Sorry, but that's the reality, even if it can be scary to think about.

There's so much they can do for her. They can check her O2 to see if she needs oxygen at home. They can do a mini-sleep study in a hospital to see if her O2 tanks while sleeping. She might need a BiPap machine. They can check her arterial blood gases.

I really hope she gets the best care for HER. All of us are different and MG isn't the same for everyone. Please tell her that we're here for her! And you. She can get through this, but she needs as much information she can to make the best informed decisions about her health.

Take care!

Annie