[Jessica]

To be honest, you need to exercise with MG. The bottom line is your body does not care that you have MG. Without a good nutritious diet and exercise your body will fall apart. My PT actually has MG.If you never exercised you literally start with walking 1 minute 2×3 times a day but moving hourly by moving I mean get up. Literally move your legs and arms and neck you set your clock to go off hourly. You progress from there. You use an RPE scale to gauge how you are doing and stop at 4-5. Get pain, stop reevaluate Never more never to exaution and never push through it. You will find in the beginning just walking 10 steps is a 4-5 It gets easier i promise but consistency. What doctors forget to tell their patients is immobility will make osteoporosis worse. I had a fragile spinal fracture from steroid related osteoporosis. The best thing is to find a PT who specializes neurological diseases but my PT is on utube

[Jessica]

I only went to one the one in tampa but attended others including Phoenix virtually. It was nice meeting people like me as I am always texting to my members from my FB site and here, and talking on virtual support groups. The first morning you were completely on your own as only specific volunteers had groups ( I am a volunteer but not a group leader so I could not attend which I totally disagreed with that should not been included or at the end.) the speakers unfortunately pretty much said the same thing in every seminar unlike the previous seminars, one seminar i hadnt a clue what it was even about, and the only other seminar that was memorable was how to fund raise for MGFA. All the rewards were for people who made the most fund raising not for the true leaders and volunteers like the ones who do health fairs or virtual support groups,the different kiosks were interesting and I was able to speak to people about new drugs and studies which was great. They also had a few breakaway groups that were only 30 minutes each those I enjoyed but way too short.The Food was good the temperature,someone told them that MG patients can react to heat so it was freezing the first day. So all in all it was good, did I learn anything new,not from the speakers but if you were a newbie the MG 101 was great ( you can watch it on utube).I heard from others and the opinions were mixed. One person who goes to all the conferences had the same opinion. I think if all you come to a conference is for just for the speakers,stay at home and do it virtually or on utube a few days later. If you like meeting people and are social it is great. Expect to be alone alot though for meals and the evenings if you don’t come with anyone or know anyone. Hope that helps

[Jessica]

Ptosis in left eyelid and blurred Vision are a constant. Right eyelid variable. But balance issues i can’t seem to get rid of.

[Jessica]

When i came out of a 7 week stay in the hospital and rehabilitation i had an static gait and was discharged from the rehab as failure to progress and told I would be wheelchair bound for life, but instead of being diagnosed as ataxia,I was diagnosed as FND. The interesting thing was I recieved retuxan when I was discharged.and 10 weeks later I was walking again and only had balance issues but no ataxic gait. I returned after the retuxan wore off but once again went away with retuxan.

[Jessica]

My MG journey has been multiple hospitalizations in crisis and multiple drugs that only work a short time. But if you ask my friends and family. they would say they never would have known it they hadn’t seen me in the hospital on bipap or ventilator. That is because I don’t let it get me down yes I am immunosuppressed and immunoglobulin deficient and probably should live in a bubble but where is the fun in that. Sure I can’t go to my house in Florida and do things like kayak and walk the beach,or sea doo, myself . I find workarounds. I take a wheelchair to and off the plane,then rest for the rest of the day,I can’t walk the beach but I can roll on the boardwalk. I can’t kayak myself I tandem kayak and my husband does all the work,and I can’t sea doo and race and have a blast, but I can be a passenger and go slow. All while wearing a mask. Yes most things I can’t do anymore the way I used to,b I 7ut there are few things I don’t do as I can find work around for everything and my friends and family work with me. Do I have bad days yes when I end up back in the hospital, and yes I do have pity parties but I time them. So I don’t dwell on them.

[Jessica]

What kind of altitude are you talking like in airplanes , on mountains, climbing montains?

I have been in planes,flown plains and been on a mountain in Colorado and NH, all no issues with anything and my MG is severe. Have not climbed to any large altitude though.

[Jessica]

I am seronegative, diagnosed 2021 after physical exam and 2 weeks later myasthenia crisis. Since then I have been hospitalized 4 more times with exacerbation/ pending crisis ( with the last one just 2 weeks ago)  if not for the quick action of the doctors with BIPap plasmapheresis and IVIG would definitely turned into crisis. I am currently on prednisone,cellcept, and retuxan and I am currently being set up for Plasmapheresis every week.  My symptoms include. Neck weakness, eye ptosis and double vision, problems with swallowing, voice issues, arm/hand/ shoulder weakness and severe leg weakness. Many of my symptoms went away with just the Retuxan and the prednisone, but my neurologist left to do research and my new neurologist thought I looked so good decided to put me on maintenance which is have the dose of retuxan and titrations off prednisone. The result  was another hospitalization. I am back up to my regular dosage but it won’t take affect for at least another 5 weeks or so. Plasmapheresis is the only other thing that works in the interim. Theresa I can’t wait for your zoom support group.

[Jessica]

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 is called MGFA MyMG Mobile App it tracks 11 symptoms with a host of other information.

[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 small and

Percentage of efgartigimod responders on the MG-ADL score in the AChR-antibody negative patient population was consistent with the AChR-Ab+ patient population, but a greater placebo response was observed in this cohort.

[Jessica]

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 gaining weight even though I am working with a nutritionist and am very disciplined.

[Jessica]

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 severely droopy right eye and blurred vision,because of insomnia,I could not stay alert enough the entire 12 hours… The staff was wonderful in helping out, even my nurse manager was wonderful in letting me try to organize my schedule, but I felt like a chain around everyone’s necks and I started to get anxious that I was going to make a mistake and hurt someone. So I took my pension and ran. It was hard to do but it truly was for the best. I still kept my license just in case I miraculously get better but it is currently inactive.

[Jessica]

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

[Jessica]

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 about how to do the exercises.  Hope they help .

[Jessica]

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 exercise videos and one yoga video and they have one person doing standing exercises while another person doing chair exercises.  I do balance exercises every day that my Physical therapist assigned to me. Also every day I do cardio, either walking on the treadmill or going for a walk with my husband. I am not saying it is easy, but I treat exercise like medicine, I may not like it but it is necessary for my survival.

[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 insurance, they go by specific guidelines and FDA approval is one of them .Getting past that is a huge hurdle and takes a miracle I am so happy for you as I said before,it gives us hope.

[Jessica]

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 lightly with only a few ambiguous symptoms and no other tests, (some people wait for years for a diagnosis when they are seronegative )because they know the drugs used to treat it that are usually life saving drugs for most with the disease are harsh and come with a whole slew of side effects which is possibly what happened to your aunt or the disease progressed to point that put her in the wheelchair which can happen with MG even with treatment .

[Jessica]

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 lumps are going down. So far so good, can’t wait until I am off prednisone for good .