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A little over 3 years ago, my husband began experiencing problems swallowing and speaking clearly.  There were some days when he could barely eat.  I had to change meal preparation to allow only food that was very soft or liquid.  Over the course of 3 months he lost 60 pounds.  He also stopped talking unless he absolutely had to, because it was…[Read more]

Nan I too am seronegative.
my neurologist is using it already off label. It can be done.
I have been On IVIG for only two months. I’m also on prednisone and Mestinon. I am currently in the process of getting my prednisone from 20 mg down to seven or eight. So my thought was I will wait to stabilize that and then attempt the VVygard as I don’t wan…[Read more]

Amy, thanks for the suggestion. Tacrolimis is definitely on the short list for drugs I will try next if necessary. My weekly  methotrexate dosage has just been increased, and my neuro ordered immunoglobulin bloodwork, so we will see if IVIG or subcutaneous IG is an option rather than a port if my vein continue to be uncooperative. I am feeling…[Read more]

I had my neuro appointment yesterday. My oral methotrexate dosage has been increased to 15mg. per week. Since he ordered bloodwork to check my immunoglobulin levels, I guess he is considering IVIG then subcutaneous IG if my antecubital veins continue being recalcitrant. Fingers crossed 🙂

Why not try tacromilus. There was just an article in it saying how well it works for MG.

I’m looking forward to hearing from someone who has had Vyvgart!

I remember my life before MG.  I mourned the loss for a long time.  Then, I decided slowing down some wasn’t such a bad thing.   Life’s easier when you accept yourself.

Not Just Dentists but every dr. or specialist you may visit needs this info. The Nephrologist now has this flagged on my records. I thought he knew.

Butterfly bandaids, strip wound closure. I have a friend that uses them all the time. My skin is so oily nothing sticks. The pirate patch was un-nerving. I got a disk from eye doctor that affixed to my glasses frame. My good eye took over on focus.

Yes, the rise in Covid cases, and the continuing arrogance of antivaxxers and people refusing to mask up, causes way more stress and anxiety than is needed.

I agree with David. Our quality of life has been lessened, and the change seems to be permanent. It looks like COVID-19, with its present and future variants, is here to stay.

“The secret to happiness is to face the fact that the world is horrible.” — Bertrand Russell

I’m not depressed so much by the fact of COVID-19 as by the large number of…[Read more]

I do not think that the VA will authorize this new drug for at least 6 months to a year.  By then we should have a pretty good idea how it works.  I’m not to excited about the side effects.

Scott

It continues to cause stress and anxiety.   More infections means we have to be more careful.  That restricts our already restricted life.  Not good…..

Scott

I had been losing weight rapidly for 18 months. About 75 pounds. From 245 to 168. My PCP did all scans to rule out cancer. But I continued with weight loss even eating full meals. When I went to the hospital with MG, my Neurologist asked if I have had to sit or raise up in bed at night for breathing comfort. I had been doing that for about the…[Read more]