Patient Comments: Myasthenia Gravis - Diagnostic Tests

Question:

What tests were performed to diagnose your myasthenia gravis? Submit Your Comment

Comment from: Ladybug, 65-74 Female (Patient) Published: May 09

In 2001 due to symptoms of extreme weakness in neck, arms and legs, my doctor being familiar with myasthenia gravis (MG) ordered blood work. It came back negative. But I was very lucky that my doctor still conferred with a neurologist and scheduled an appointment for me. At this appointment I was given a repetitive nerve stimulation test which proved positive for MG. So I am referred as seronegative. After many trial and errors as far as medications, the best that works for me is Imuran.

Comment from: PA John, 75 or over Male (Patient) Published: January 14

I initially had drooping eyelids and double vision, followed by swallowing issues and tongue thickness. I was also feeling numbness and tingling in my legs. I was diagnosed by my eye doctor and then had a blood test done that verified myasthenia gravis (MG). Then I went to a neurologist and he did shock tests on my arms and legs to determine the extent of the MG and put me on prednisone, Mestinon and Imuran, which made me very nauseous. The Imuran was stopped and the nausea stopped. The Mestinon caused such severe cramps and had to be stopped. He then put me on Gamunex-C IVIG for 3 days a month and I have been doing very well for the last 1.5 years. However, IVIG is very expensive (USD 22K/month) and I must copay USD 6700.00 per year and insurance pays the balance.

Comment from: Jose C.., 45-54 Male (Patient) Published: April 28

I'm a myasthenia gravis (MG) patient since 2013 but misdiagnosed with Bell’s palsy in 2012. Three myasthenic crises later (requiring intubations), my neurologist suggested IVIG. Seemed successful till symptoms worsened. I was on prednisone 5 mg, pyridostigmine 180 mg and azathioprine 300 mg post diagnosis. Did surgery to remove thymus gland in 2018 and I have been symptom free since. I am highly allergic to azithromycin. So be careful, as I was once given it to treat pneumonia, I went into respiratory failure and flatlined for 3 minutes. Good luck to us MG patients.

Comment from: Charlene Fournier , 55-64 Female (Patient) Published: September 14

I was tested for myasthenia gravis about 25 years ago by a neurologist that I saw for 15 years. At that time he wanted to check me, because of signs and symptoms and at that time I only had systemic lupus erythematosus (SLE), degenerative disc disease, joint disease and fibromyalgia. Now since then I now have 4 autoimmune diseases, rheumatoid arthritis and psoriatic arthritis. And the neurologist that I have now is talking to me about starting immune infusion therapy. He says I am a very sick lady. I have been in pain for years day and night.

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