Jessica

I stand corrected and I have to say I am so glad I was wrong you give me hope. What is the name of your doctor and what is your insurance in what country.  My neurologist tried on multiple occasions with my insurance and I was denied and believe me she is tough. You are right it is not the argenx that is the problem most of the time it is the…[Read more]

Yes seronegative is a slippery slope but Theresa is seropositive, which means there is zero doubt that she has MG even if the medicine she does take does not work ( I know she is seropositive because vyvgart is only FDA approved for seropositive patients).I am sorry about your aunt but neurologists do not make the diagnosis of seronegative MG…[Read more]

This was given to me from an MG friend

https://solirisgmgpro.com/getting-started/-/media/9E6B36237C084D45A1E267629A26879E.ashx

There are also 2 apps that track Myasthenia Symptoms  that are excellent ,one is called myasthenia symptom tracker. It tracks Myasthenia symptoms as well as SBC, weight, peak flow, steps etc…and the other is new, it…[Read more]

I was diagnosed one year ago through physical exam,ice pack test and mestinon trial. When my blood result came back negative I was scheduled for an EMG and SFEMG. Before I could have it done, I went into myasthenia crisis and was intubated. At that time everything was thrown in. Unfortunately I was considered refractory. I have had 2 more crisis…[Read more]

Theresa I am Sero negative and would like to join your group. Cannot figure out how to PM you though

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]