Jessica

This is why there is no FDA approval for us seronegative ab patients.

https://www.argenx.com/news/argenx-announces-positive-topline-phase-3-adapt-trial-results

The trial was done on both AChR positive and negative patients. There are 2 reasons the FDA did not approve the drug for seronegative and musk patients, is because the sample was too…[Read more]

I lost 20 lbs due to being in the hospital,not being able to swallow anything even my own saliva, and not given any substitutes like TPN for 16 days. When I was able to take in purées, I was started on prednisone at extremely high dose and gained it all back and then some. Now that I finally can eat solid foods, I am afraid I will continue…[Read more]

I was emergency unit registered nurse for 47 years and I had to retire. I could not do CPR on anyone, go at the same pace without lots of rests, start IV’s due to lack of manual dexterity, I could not fit all my doctors appts, treatments and therapies in with my schedule ( 12 hour shifts), my husband had to drive me to work because I have a s…[Read more]

Weaning off prednisone now, going from 60mg. My neurologist says it will take up to a year to come off, she plans on going extremely slowly when I get to 20 mg ( 5 mg every 3 months) so as not  to rebound. So far only good things have happened . My belly is down by half, the puffiness of my face is almost gone, and my neck and the back of my neck…[Read more]

These are the links to the exercises they are both the same if one does not work try the other

https://youtube.com/playlist?list=PLvJ7HXj75I1qN-_YjbhjfDf9npBaE0AK_

Or

You can find all the content at this link: https://tinyurl.com/mytux23s

I am new here so I am not sure if I a can put the url link here. If I can I gladly will. It was sent to me by my support group leader and they are free. In the mean time, they are also on utube

Type TEXAS WOMEN’S UNIVERSITY PHYSICAL THERAPY in the search box. There are five videos,  the first one is watch me first. It has the instructions ab…[Read more]

I was diagnosed  August of 2021. Since then I have been in crisis twice before October. I got my neurologists blessing to start an exercise program one month ago so now  every other day in the morning when I am strongest I put on a video done by PT students of Texas university that was made for MG patients specifically. They produced 4 videos,3 e…[Read more]