Here We Go Again

By CommunityMember816

2 min read

I was diagnosed with MG in March of 2021 but knowing what I know now, I probably had this disease years before.

My first crisis

When I was first diagnosed, I had no idea of what a crisis was let alone all the varied symptoms. My neurologist is well educated with MG, in fact, he is on a research team that developed one of the newest therapy drugs. His recommended treatment worked great for about a year and a half.

In fact, I didn't believe I really had MG till my crisis. 10 days in the hospital, with 3 in the ICU was about all the education I wanted.

A recent flare-up

I have been symptom-free for 9 full months after my MG crisis of Memorial Day weekend of 2022, and I'm not sure what caused this current March/April 2023 "flare" or rapid reversal. But the telltale signs started popping up! Difficulty swallowing, then chewing, sore eyes with out-of-focus vision - luckily, no breathing issue this time so I think we responded early enough. We were scheduled to travel to Europe in a week but those plans were quickly canceled!

I went to the ER after 3 days of mild symptoms to avoid a possible crisis. I was treated with a regiment of 3 days of infusions plus my regular regime of Mestinon, Prednisone, and CellCept. That was 10 days ago and I think I am limping back to "normal" Whatever that may look like.

My scariest symptom

The hardest symptom to deal with is swallowing. I am afraid when I wake up to drink fluids because of the choking, coughing, and sneezing, did I mention the choking that is happening? Taking my morning meds takes 30 minutes at best, then trying to relax my body and mind takes another hour. Eating is a workout!

Thankful for my support systems

My wife is my best advocate and a nurse of 43 years but this is taking a toll on her also. She wants to fix this but can't. I want to fight this but it is a tough battle. My faith in God and His Son gives me the daily strength I need. The meds and these blogs give me to support also.

I am saddened to read some of the accounts of MG posted but it also humbles me to know that I don't have it as bad as some. Advice and conversation are welcomed!

Share my own story

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Pep1687 Member
Hi, I just had a crisis, ambulance had to come get me because I could not get any air in. I had to be incubated. Stayed almost two weeks, and had many breathing attacks while in the hospital, along with IVIG infusions with prednisone, mestinon, and I got sick on my cellcept, couldn't hold my head up, headache, and my jaw locked up. I don't know what happened, breathing had been bad for three days and I should of went in and didn't. I have learned a very important lesson about MG. It may seem petty to go in, just go in no matter what anyone tells you, only you know, if friends and family say it's just in your head we'll then they don't care. I always tell them Don't sleep for four days and do your normal activities, then tell me how you feel.I feel for anyone who has this, I wish there was something that could at least lesson the symptoms and make us feel better.
CommunityMembere9de78 Member
Thank you for your story. It was also good for me to read about more recent diagnosis for MG. I was diagnosed on April of 2022 but like you believe I have had MG for a lot longer but really did not know until my wife did some research and really advocated for me with my primary Dr. Also we met a really good Dr in the ER with my first flare about a month after my diagnosis who made sure we were referred to a very good neurologist. Anyway these is a lot more to my story I tell another time including hospital stay for a week in June 2022. I believe I am on the right plan for managing my MG which is Generalized. I have one suggestion for you. Have you tried using applesauce packets to swallow your meds with especially in AM? I have them much easier to take meds with than just a glass of water. It does not take much and the thickness of the applesauce vs just water works well for taking pills when swallowing is the challenge. Take care and God bless you.
CommunityMember816 Member
My story is still being written! Since mid March I have been in a “flare” and it is now May 27. Last evening was the first time I could actually drink a glass of water! That is a milestone. My treatment had changed. The IvIG stopped working in mid-April so I was relegated to an increase in Prednisone and purple blotches and very slow recovery. My neurologist decided to try Ultomiris which requires meningitis vaccinations prior to using. I’ve had one infusion and waiting on the second loading dose. Now we have issues with the insurance company (Aetna). They don’t recognize prednisone as an autoimmune suppressant drug? All definitions say otherwise and they are denying coverage! So how I pay or who pays for this drug is still unknown. But 2 weeks after the first dose, I think I’m out of the woods! Thank God!
1. lauren-ruffalo Community Admin
 Hi <inline-mention username="CommunityMember816" user-id="4823446"/>, thanks for sharing this update with us! It's exciting to read about your recent milestone. We are cheering you on and wishing for continued relief. Navigating insurance can certainly be stressful. You may have already considered this options, but wanted to send this article along just in case: <a href='https://myasthenia-gravis.com/resources-cost' target='_blank'>https://myasthenia-gravis.com/resources-cost</a> Please let us know how you're feeling and how things go with insurance. Best, Lauren (Myasthenia-Gravis.com Team)
Aella Member
Is there a list of antibiotics that can safely be taken along with Pyridostigmine ..I am visiting the dentist with a suspected gum infection ..and want to be prepared thanks 
1. lauren-ruffalo Community Admin
 Hi <inline-mention username="Aella" user-id="6723446"/>, I am not quite sure about the interactions with pyridostigmine, but this article talks about medications people with MG should avoid taking. <a href='https://myasthenia-gravis.com/clinical/drugs-vaccines-to-avoid' target='_blank'>https://myasthenia-gravis.com/clinical/drugs-vaccines-to-avoid</a> We encourage you to check in with your doctor before your dentist visit to double check with them about any additional medication that should be avoided or can be taken safely. Best, Lauren (Myasthenia-Gravis.com Team) 
2. Pep1687 Member
 I can safely take Atovaquone, and have taken cefalexon before. It could be different for others
CommunityMember816 Member
Thank you for your comments
Jodi Enders Moderator & Contributor
<inline-mention username="CommunityMember816" user-id="4823446"/> I was diagnosed in August 2021. It was nice reading the story of someone diagnosed as recently as me. Despite how disappointing I bet it was, I am glad you decided to cancel your trip after your flare. That is proper self-care. It sounds like the ER visit to start infusions and in case of breathing issues was the smart call. I hope you return to the normal remission phase you were in. - Jodi, Team Member
CommunityMember816 Member
Thank you for your caring thoughts!
Jazmin Clayton Moderator
Hello, I was diagnosed with MG in 2012 and I too feel like I might have had the disease years prior to my actually diagnosis. Swallowing difficulties has to be the most annoying to say the least. I feel your pain. I also experience when I start choking everything seems to come out my nose. Your wife is a beautiful soul and you are very lucky to have her in your corner. Take care and I pray you are feeling better. - Jazmin (team member)