Marguerite Thibeau

Paul, you should always call your Insurance company to find out what your benefits will cover.  Plans vary, where you receive treatment affects the cost. If you have Medicare A, B, D or C  each section can vary, Sometimes you might need your provider to tell you what code they bill under.  Vyvgart Pathways can help you get answers if calling yo…[Read more]

TAF told me Rituximab isn’t covered, so I got stuck with a huge bill. The hospital/doctor told me I needed it, and TAF would pay. Later someone told me Rituximab takes a long time to kick in, and I was given it while waiting a month for my Vyvgart.  So I was left with $3,000.00 bill for nothing,

I saw 5 Neuros/Neuromuscular doctors and several hospitals before settling in very happily with Dr. Amanda Guidon and her MG clinic which includes and infusion suite. She is my all time favorite doctor. And MGB my favorite hospital. They have plasmapheresis available, which is rare. Here is the MGFA list of…[Read more]

I don’t tolerate many drugs so I’m not a fan of prednisone for me. It’s an important tool for MG, and has helped many.  But those of us who didn’t do well on it are more likely to reply. My Dexa Scan showed increased bone loss, and my teeth had increased problems. I regret taking it. Women have more of a problem with bone loss. And I feel my…[Read more]

I received the 2 different monoclonal antibody drugs (MAB) in March. I started to get a slight headache, then realized I wasn’t hydrated. Because I had to drive over an hour to get it, I had avoided drinking. So I drank water and the headache left. I will be getting next dose in October. I don’t tolerate vaccines. I suspect it’s the…[Read more]

Imuran and Cellcept are 2 of the most widely used and tolerated meds. I have trouble with many meds, from cosmetics to heart meds so it’s no surprise I had trouble with these, unfortunately. They are older, well tolerated, solid drugs with a long track record. Imuran caused a bout of pancreatitis. The doctors were wheeling me out to go to surgery…[Read more]

Magnesium is very necessary for healthy muscles, and easy to get through our diet without problems. Certain populations are low in magnesium as the soil in the area is low and not enough was available in food. Scotland had this problem.

“Magnesium is in charge of numerous important functions in our body. In the power plants of our cells, the…[Read more]

I am currently on  Vyvgart, and doing great. My doctor said that patients that have a  positive reaction to Plasmapherisis tend to do well on Vyvgart. This has been true for me.  I too am curious why he felt it’s not a good match.

Insurances can play a role in what Meds we can access. Some want other drugs tried before certain treatments.  I had…[Read more]

I’m seen at the MGB Clinic. I have had such great experiences with  them. I was concerned about the idea of a clinic, I was wrong. My Doctor is always there for me, backed by a knowledgeable team. She has come to visit me in the hospital, called me to check on me. Wonderful in every way!

Thank you for sharing. I have MCS as well as MG, and am very concerned as every vax has made me sicker. I’m meeting with an Infectious Disease specialist tomorrow to discuss.

Robert, lots of great points in here. It’s great when we can have a family member with us, but if not we have to advocate for our selves, with kindness and appreciation. We are consumers of medical services and they there to help us. Generally they are terrific, but mistakes are made, so be attentive and watch out for yourself. I changed hospitals…[Read more]

Douglas, it was from a conversation with one of my doctors as something to consider. I would love to get the vaccine, but haven’t tolerated them in decades.  I had to get some for Soliris and each landed me in the hospital and weak for months. This is not related to MG, but my other auto-immune issues. If you tolerated the 1st one, then perhaps…[Read more]

On good days I also freeze things like chili, seafood chowder, beef stew cut tiny. My son has MCAS and can’t be around when I cook, or even make toast for himself. It’s a great motivator for me. Once a month a get a fresh roast and grind it, make patties and freeze them. We can’t do store bought hamburger. Once a week I make 4-6 loaves of  Milk…[Read more]

If you have speech or swallowing issues have aback up way to communicate like a notebook and pens.  Tablets or devices that you can stay in touch with the world and be amused by, like ebooks or audiobooks when you eyes get tired. Most libraries have free downloads.

Sometimes I needed help getting what I needed. One hospital wanted me flat on my…[Read more]

As if our MG and other autoimmune issues weren’t enough to deal with! I was told we would need to be off immune suppressants for 2 weeks before the vaccine ( for each injection). Tough to do. As I also have MCS vaccines send me into a flare and hospitalization, so I can’t risk them. I really wish I could, because I could be part of the extended…[Read more]