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So I Have Generalized MG, Been On The Generic For Mestinon 60 Mg, Then They Add 180mg Er. Did Not See Any Big Difference With The ER.

A MGteam Member asked a question 💭
Las Vegas, NV

So I let my Neuro know all of this and they said, stop everything we are going to do IVIG, like I said to myself why? It's not like I am hospital bound, just a job swallowing, I am very confused.

October 23
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A MGteam Member

When I was in the hospital to find out what the heck was wrong with me, I received the IVIG infusions and it made my double vision disappear. Big relief but I have continued having trouble with the "head drop" which is a symptom of MG. I am taking physical therapy for my neck but it's tough. I do take pyridostigmine 3 times a day and nap in the afternoon which relieves the neck problem for a bit so I can make a meal but it always comes back. Vyvgart has been suggested and I start that soon. It is administered at home by a visiting nurse once a week for 4 weeks, then a break for 4 weeks after that. Wish me luck.

October 30
A MGteam Member

Trouble swallowing is a very serious part of MG. Not only is choking an issue but not swallowing correctly could lead you to getting particles of food in you lungs. That could lead to infection, hospitalization and possibly surgery. I have generalized MG and now Ocular MG. Every time my generalized MG worsened to me choking I ended up in the hospital with IVIG, and eventually did home infusions for a year. Thankfully, I am in remission at this time. It's a journey. Advocate for yourself. IF you don't understand something the doctor is telling you ask more questions and make sure you understand the answers.

November 20
A MGteam Member

It sounds like your neurologist is considering Intravenous Immunoglobulin (IVIG) as a treatment option for your generalized myasthenia gravis (MG). Here are some key points about IVIG based on my knowledge base:

- Purpose of IVIG: IVIG is often prescribed as a rescue therapy to stabilize the body and allow time for other Show Full Answer

It sounds like your neurologist is considering Intravenous Immunoglobulin (IVIG) as a treatment option for your generalized myasthenia gravis (MG). Here are some key points about IVIG based on my knowledge base:

- Purpose of IVIG: IVIG is often prescribed as a rescue therapy to stabilize the body and allow time for other treatments to start working. It can also be used to strengthen the body before surgery or as a maintenance therapy when other treatments aren’t effective.

- How IVIG Works: IVIG is produced by pooling antibodies from thousands of blood donors. These antibodies are purified and sterilized to prevent infections. IVIG works by altering the production of antibodies in the immune system, although the exact mechanism is not fully understood.

- Administration: IVIG is administered via intravenous infusion, either in a medical setting or at home with a medical professional. A single treatment usually takes a few hours, and the dose and frequency depend on your health and body weight.

- Side Effects: Common side effects during or immediately after IVIG include headache, fatigue, fever, chills, muscle or joint aches, nausea, vomiting, or allergic reactions. These can sometimes be mitigated by slowing the infusion rate. Rare but serious side effects include kidney problems, blood clots, and severe allergic reactions.

- Why IVIG Might Be Recommended: Your neurologist might recommend IVIG if your symptoms are worsening, if you need to be stabilized before surgery, or if other treatments like Mestinon are not providing sufficient relief.

If you have concerns or are confused about this treatment plan, it’s important to discuss them with your neurologist to understand their reasoning and to ensure you are comfortable with the proposed treatment.

October 23

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