Jessica
Forum Replies Created
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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.
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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.
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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.
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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 and multiple exacerbations My doctor says I am in a continuous stage of fluctuation. In other words I am brittle. In the end of December a trial of retuximab was tried and it was finally starting to work, so well that my extremely high prednisone was being titrated down. Unfortunately my body did not take to the decrease so I went into crisis again in May. I just got out of rehab. A little down whenever I hear of all the news about drugs out there that we can’t have and all the research being done with us included but because we are such a small group,we are being excluded. Oh well. Maybe someday our turn will come.
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Theresa I am Sero negative and would like to join your group. Cannot figure out how to PM you though
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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.
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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.
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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.
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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
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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 .
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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.
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Just email the support group they meet this Saturday at 200pm
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I can’t I can’t you have to contact [email protected] by yourself to get the link
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Why do you think ataxia
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Hope this is ok they are meeting on zoom Saturday Nov 18 th at 200 but must contact the leader to get the zoom link
myasthenia.org
Myasthenia Gravis Foundation of America > MG Community > Find MG Support Groups
The largest, leading patient advocacy organization solely dedicated to finding a cure for the rare neuromuscular disease myasthenia gravis (MG) while improving the lives of those living with MG.
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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. Â 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.
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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 .
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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 .