Hi, I have just been dx with MG. I am just leaning about MG. What should I know about managing my symptoms. I am to start treatment next week. What should I know about the types of treatment.

Welcome to the forum, i'm new here myself. You'll find lots of helpful informative people ready to answer almost any question ou can think to ask.

It might help if you let the folks know what type of MG, occular, generalized, what kind of treatment etc.

Wishing you all the best for next week!
Rachel

Welcome RJTJ!

Sorry you have MG - - but glad that you have a solid dx and that you have found this forum. Lots of great folks here with first hand info that is freely shared.

Cruise around and get a feeling for the varying degrees of MG - - some here are severely challenged with their MG - - and others (like me) not so much.

What are your symptoms and how active are you able to be?

What meds have they started you on?

In general, for MG'ers:

Heat and cold both can each increase muscle weakness

Certain antibiotics (and other meds) are not a good idea (MDA site or google for specifics)

Stress will make you weaker

Lack of restful sleep will make you weaker

No two days will likely be the same (even with the same levels of medication and activity on your part!)

Don't let things you read scare you. You'll figure out how to best handle your MG with the help of your docs, your research, and by learning what your body is telling you (which only requires your time and attention and knowledge).

Sue

Hi there, just speaking from my experience be very very cautious with getting hot from weather or water if you think this is part of your profile. It sure is for me and I was never warned how dangerous and dramatic it could be. I ended up in the hospital from a hot water incident. It made me worse in minutes and I have never gotten back to that level of strength. I tend to get stronger in the winter as my muscles like the cold and get better as the season goes on.

Now this is me but I know others are not as strongly affected as I.

Annie59

RJTJMomma, Welcome. From your name, it sounds like you may have a child or two. MG can be tough for those with kids but it's doable.

Everyone gave you great advice already. If you haven't been to these websites, they may give you more info:

www.myasthenia.org
www.mdausa.org

I'm a big proponent of having a pulmonologist as well as a neurologist. If you ever have an MG crisis, those two specialty doctors work together. Do you have any shortness of breath? It's good to know what your baseline readings are so that they can know how "relatively" worse you may get. They do basic breathing tests plus the neuromuscular disease specific ones of MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure), which show how strong your chest wall muscles are doing at breathing in and out.

Reading past posts is very helpful with knowing the variety of treatments, especially if they try to give you Prednisone right away. Pred can be really hard to wean off of.

I hope you will ask more questions, especially of your neurologist. I hope the appointment goes well.

Annie

Hi, and welcome. Here are some more basics! They will probably give you Mestinon (the generic version is called "pyridostigmine"). Some people need to take it with food to avoid stomach pains. Mestinon is usually taken at least every four hours, because it leaves your blood quickly. For people who have trouble at night, there's a time-release version. If a small dose isn't working, your doctor may tell you to take more, or take the doses closer together, but be careful: too much can make you worse.

Mestinon is a good drug that helps many of us. It works by blocking the enzyme that breaks down acetylcholine. Acetylcholine is the chemical your nerves release to communicate with your muscles.

Some people find that Mestinon is enough of a treatment. Others need a drug that suppresses their immune system (because MG is an autoimmune disease: your immune system is attacking the communication between your muscles and cells). The three most common drugs used to suppress your immune system are prednisone, imuran, and cellcept. Prednisone works the quickest, but it also has the most side effects--that's my impression, anyway.

Another treatment option is to have your thymus gland, which is behind your rib cage, removed. This is done for people who have a thymoma (growth on the gland), but not all MG patients do. Sometimes it's done on patients who don't have a thymoma, in the hopes that it will put them into remission, but it's not perfectly clear that this helps. I read that of patients who have the operation, one third notice no change; one third get somewhat better; and one third go into remission. But it's not known for sure whether those things would have happened anyway. People who do get better after having their thymuses removed don't usually get better immediately.

I hope this helps, and I know someone will correct me if I got any of this wrong.

Abby

This is a terrific forum with helpful people, so feel free to ask questions.

Abby