Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello,
My father was diagnosed with MG last year but I know he has had the condition for at least two additional years (we lost a lot of time until a neurologist diagnosed him).
I think the hot summer has affected his symptoms. Last week he had two small crises. Nothing serious happen. We went to the ER but they (doctor and nurses) put him just oxygen and an albuterol therapy. Both times we left the ER hours later. I think his last dose of Mestinon (the dose that he takes at 8 pm, 90mg) is taking time to make any effect because his symptoms worsened at 8:30.
To sum up, he is starting his first IV treatment on Tuesday. The treatment will be 30g of IV for 4 days. He will take this treatment in the hematologist office (outpatient). His neurologist said that my father must continue taking his Mestinon as usual (until we see him).
I am very anxious. I want to see results immediately (I know is not possible).
Any insights?
PD: My father has other problems besides MG. And I am the person in charge of him. I am totally exhausted of dealing with doctors, insurance plans, paperwork...
My father was diagnosed with MG last year but I know he has had the condition for at least two additional years (we lost a lot of time until a neurologist diagnosed him).
I think the hot summer has affected his symptoms. Last week he had two small crises. Nothing serious happen. We went to the ER but they (doctor and nurses) put him just oxygen and an albuterol therapy. Both times we left the ER hours later. I think his last dose of Mestinon (the dose that he takes at 8 pm, 90mg) is taking time to make any effect because his symptoms worsened at 8:30.
To sum up, he is starting his first IV treatment on Tuesday. The treatment will be 30g of IV for 4 days. He will take this treatment in the hematologist office (outpatient). His neurologist said that my father must continue taking his Mestinon as usual (until we see him).
I am very anxious. I want to see results immediately (I know is not possible).
Any insights?
PD: My father has other problems besides MG. And I am the person in charge of him. I am totally exhausted of dealing with doctors, insurance plans, paperwork...
A chronic disease, it is - an exhausting, frustrating thing to go through. For many of us here, it has also taken 2 years, before a diagnosis. (Many have taken much more than 2 years.)
Yes - summertime heat can have a terrible effect, on people with MG. Heat affects the neuromuscular system of healthy people, even Olympic athletes. More so, for people with MG, people who have neuromuscular problems. Frequent, quality rest - can be a help, as an addition to therapy.
The IV therapy? Will this be I.V.I.G.? Intravenous Immunoglobulin? Or is it another IV-Therapy? IVIG helps many.
Wishing you the very best - Ross
He will start the IV Imnuglobulin treatment tomorrow. I am counting the minutes.
Wellness,
Thanks for you advice.
One down three to go.
One nurse injected Benadryl.
IV was like a serum. Two small bottles injected in my fathers vein in four hours. I thought that IV would be like dialysis.
My dad didnt suffer from any headache. Two times the tube got plugged and blood came in the other direction, but in general the process was very easy.
Most of the other patients in the hematology center were receiving cancer treatment. None had myasthenia gravis. I asked the nurse if he had dealt with a patient with myasthenia gravis before, and he said that only one time.
My father is improving. He can swallow better, and he is not coughing.
No headaches.
No headaches but he is not feeling well today. He is coughing again.
If this therapy doesn't work, I don't know what to do next. I can't hear this coughing every day.
Michele
Three times every other week is a lot. I don't think my father's insurance would cover that frequency.
My father was not feeling well since he woke up this morning. So It was not anything related to the IVIG treatment.
But he is eating like a horse. He ate today some ribs. He doesn't need to put his hand under his jaw to eat, as he did during the last couple of months.
Tomorrow is the last 30 grams of IVIG. I will text message his neurologist to know what the next step is.
Now we will see the neurologist on Thursday. I hope my father doesn't have a crisis until Thursday.
PD: I need some sleep....
He has only a little coughing, specially during the mornings.
We have another appointment with the neurologist on September 30. During the last appointment, the neurologist recommended another round of IVIG in October. We will see what happen.
Today my father started taking a 10g dose of Pyridostigmine, one a day (besides the Mestinon). He has diabetes, so the neurologist wants to know how his sugar levels react to this medication.
My father started today a 10 mg dose of Prednisone. Pyridostigmine is Mestinon.