[Leigh]

Give yourself some grace. It’s ok to slow down. You can have just as a fulfilling life but it might look a little different. Embrace the different. Become willing to pivot at any moment. Join a support group. Don’t think you can do this alone. Mental health is just as important as your physical health. Educate yourself and your loved ones. Take it one day at a time.

[shawna-barnes]

Such great advice Leigh!

[MikeS]

“Dear Me: Skip the Azathioprine. It will cause you liver damage and then you’ll have to try Cellcept.”

[Kent Moore]

It definitely can be harmful to the liver — and that’s why liver function should be constantly monitored by your neurologist. I have labs done 3 times a year. So far, so good. I’m sorry it didn’t work out for you.

[Jodi Enders]

Hey there! I just wanted to let you know that I sent you a private message about a volunteer opportunity for our MG Community Spotlight. I’d love for you to check it out when you have a moment!

[shawna-barnes]

I take Azathioprine. I’m on 200mg/daily. I tried Cellcept but didn’t do well on it. So sorry to hear that it caused liver damage for you.

Thank you for sharing.

[Douglas Manning]

Steroids are a monster. Your case will be complicated and as you plow through each possibility seeking a remission state, steroids will be there, giving you cataracts, keeping you immunosuppressed, sap your skeleton like a vampire. But, they will let you live.

[shawna-barnes]

Thank you for adding the warning about steroids, Douglas. It’s definitely a double-edged sword. Seems like you’re damned if ya do and damned if ya don’t take it. At least in my case.

[Robert Davidson]

Find a Neurologist who specializes in MG, Most do not. They only know what they learned in medical school and, since they don’t specialize in MG, don’t do continuing education. I was told while in the hospital that my doctor and one other were the only ones in the San Francisco area that have over 100 MG patients. Your primary care doctor probably won’t know a specialist either.

[kut]

I told myself I would’ve pushed these doctors harder. I feel the doctor’s hands are so tied so much by insurance companies. They’re not taking the time with the patient. I was told it was because of my age because I have buried my husband and my mother and my mother-in-law that things in my life, but they never went deeper but the debilitating fatigue and every symptom was just right there, five doctors missed it. The shortness of breath the fatigue and the lack of muscle strength could’ve been handled much better if I was diagnosed earlier, at least I feel it could be and you’re right finding the right neurologist who will work with you and work with your insurance company is a real plus for you. Getting an appointment is another challenge. I was very fortunate that my ophthalmologist said I explained my symptoms to a tee and he called and got me in with the neurologist the very next morning. Hoping this third type of treatment helps me. This is a journey you must take along and be the best advocate you can for yourself.

[Amy Cessina]

Don’t believe everything you read because it will scare you. Everyone’s case is different. I remember reading don’t drink hot liquids or eat hot food and everyone said it’s going get really bad. It scared me so much I couldn’t function mentally for 6 months. Then I got a grip and went on with my life and none of the really bad stuff happened.

[shawna-barnes]

So very true Amy! We are all different. It’s why MG is called a snowflake disease.

It’s a good thing I’m not affected my hot drinks… I need my coffee… haha

[Mama]

I miss all the energy I used to have

[Jo-Ann]

Take it one day at a time, do the best you can. Most of your energy will be in the morning to early afternoon so use that time to do your harder tasks. Don’t worry if you can’t accomplish everything, it will be there tomorrow.

[Jodi Enders]

“It will be there tomorrow” could not have been said better! Love this advice – Jodi, Team Member